hi I’m new to this group , looking for some help support with over active thyroid. I just started taking meds for this but feel worse rather than better these past days. I’m taking beta blockers also for irregular heart rhythm and anxiety. It’s all absolutely awful it. effect -ing my day to day life !
I’ve been feeling unwell for a year now and only just diagnosed with this over active thyroid. I had to keep telling my GP that some thing wasn’t right with my body but they just kept telling me I had over sensitive immune system ( un true )
I had over active thyroid and I’ve battled with it all this year feeling absolutely awful and not knowing why I had internal shaky feeling , eating more sweet food and absolutely knackered in afternoon and awful mood swings and worst anxiety palpitations, And now I’m getting the answers but still not feeling great infact feeling worse by starting Carbimazole 20mg . Has anyone else felt like this ??… when do you start to feel a bit better as I’m struggling with it all right now ☹️
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Bellissima3
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First thing to do, if you haven't already, is to get hold of print-outs of your blood test results. You need to know exactly what was tested and what the results were. You especially need to see if they've tested antibodies - which they should always do before prescribing anything, but they often don't. And you need to know what is causing the over-activity - could be one of several things, and know that will inform your next steps.
When you get these results, post them on here - results AND ranges - and we'll explain them to you. It all feels a whole lot better when you know what's going on instead of groping around in the dark. And I bet your doctors didn't explain much too you!
Anxiety and heart irregularities can be part of the disease. And whilst beta blockers can be useful, not all beta blockers suit everyone. Could be you need a different type. Ask your doctor if he can change it.
hi thank you for your comments , this is all very new to me and I’m struggling with all the terminology If I’m honest . This may help you to help me as I’m not sure what all the results mean , thank you for your support,
A copy of GP report when attended A&E dept on Saturday 14th December.
OK, so your TSH is low, but that's really not the problem. The problem is the high FT4. Unfortunately, as you haven't put the range, we can't know exactly how high. But at first glance, it doesn't look high enough to be Graves'. And, unfortunately, they've only tested one of the four antibodies, so even though it's high, it doesn't confirm Graves' either. Because it can be high in the other autoimmune thyroid disease: Hashimoto's Thyroiditis - aka Hashi's. Ideally they should also test TSI and TPO antibodies.
Myself, I have never been on carbi so I don't really know if you feel worse before you fell better. But it wouldn't surprise me. Carbimazole is an anti-thyroid drug. It stops production of thyroid hormone by the thyroid. It cannot do anything about the high levels of thyroid hormone already in the blood. That has to be used up or excreted, and that takes time. But, eventually levels will come down and you will feel better.
Yes, your FT4 is 28, but what is the range? Usually it's something like 12-22, written in brackets after the result. Without the range we cannot interpret the result.
But, yes, it's too high, and that would make you feel uncomfortable. The question is why is it that high? And for that we need the correct antibodies tested. And doctors are really bad at that!
in my opinion ( based on 'wot i understand so far' ) the positive TSHab (TRab) result in this instance does confirm Graves (ie , thyroid overproducing T4/T3 due to the stimulating form of TRab ), even though the levels of T4 are not extremely high.
because ..... if the high TSHab (TRab )levels that this test found were mostly the blocking kind of TRab , then they would be causing low T4 levels , not high T4 levels .... we can tell what sort of TRab the test has found by looking at their action.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
bellissima , there are 3 sorts of TRab , one is 'stimulating ' which causes graves , one is 'blocking ' which causes a more unusual form of hypothyroidism , and the other is 'neutral'
Most TRab tests can't tell the difference .. they count them all together .
there is a test which counts just the stimulating ones .. it's called a TSI test (Thyroid Stimulating Immunoglobulins) ... but we can be sure that the sort found in your test are ( mostly) the stimulating ones , because if they were the blocking ones , you would have low T4 levels , not high T4 levels.
Where did - and who wrote - these hand written blood test results ?
Back in August your T4 was at 20.90 and there is the mention of Graves - with a TSH ab level - looking high - but there is no cut off number and no T3 reading / range :
Why was no action taken then to medicate ?
In December your T4 had built up to 27.70 - there is no T3 reading - and presume when you started the AT drug.
There should be a formal letter detailing this information as correct and offering a treatment plan.
I was left all over summer and went away and felt absolutely awful not knowing why my body was feeling this why symptoms I mean.
I had to push and push to see an endocrinologist as my GP left me waiting so I called and called until they finally gave me an appointment a week ago !
If left I could of got do much worse
I was going to go private if I didn’t get an appointment last week. That’s how desperate I was and the person that wrote these notes was GP on call at A&E dept last Saturday , And no formal letter of any sorts
Ask admin for a list of preferred Endocrinologists by PM. There are more bad than good in the NHS. Thyroid problems are not taken seriously and I think it is because it is so difficult to treat. Most Endocrinologists specialise in diabetes
The list of recommended endocrinologists and thyroid specialists - NHS & Private is now held by admin at Thyroid UK - the charity who supports this patient to patient forum -
so just send an email to admin @ thyroiduk.org asking for the Patient to Patient recommended list :
I'm not sure but I think their Christmas break is imminent :
I also really need to be on my desktop instead of my iPhone it gives me a better view of the threads. I am in bed at the moment because I have some kind of virus. I can’t seem to get my temperature down and I have already taken my daily quoter of paracetamol
I couldn't possibly follow any thread on my mobile phone and why it lives in my little car for emergencies only when out driving and why I don't really know what I'm doing with it and hopefully never will need to phone the emergency services. !!!
Rest up - turn off all your electrical devices and pop on some music - so low you can barely hear it - and hopefully fall asleep -
Wishing you better - there seems to be a lot of bugs going around at the moment.
That is why the admins don't hold the lists - making sure we always have the latest version would be a problem.
(Incidentally, that's also why I tend to post links to my documents rather than their content. Means people can always check they have the latest version.)
Hi. I stopped taking the beta blockers because they made me feel spaced out also you have to wean yourself off them. You could just take the carbimazole that’s what I did and eventually PTU because it didn’t suit me and I came out in hives. You need to have regular blood tests to check your levels because if you are not careful your levels can become too low. Also carbimazole is a very powerful drug with some side effects it doesn’t always suit everyone and it didn’t suit me. You can read my story on my page if you are interested.
It is very early in the morning here in the UK and there will be other members who can advise you when they wake up.
Unless you aware of swelling in your neck or have trouble swallowing and or breathing the next thought is that this over production of thyroid hormones causing an over active thyroid is either Graves or Hashimoto's - both Auto Immune diseases -
Graves is a multi organ AI disease and generally only diagnosed when the immune system starts attacking the thyroid and or eyes - and Hashimoto's is another immune system malfunction which only attacks the thyroid and or eyes -
with Thyroid Eye Disease occurring independent to or as well as both of these health issues.
In order to know exactly what you are dealing with we do need to know which antibodies were found positive and over range in your blood test - and also what were your TSH, Free T3 and Free T4 reading and range at diagnosis - as the treatment differs considerably.
Carbimazole is an Anti Thyroid drug and generally prescribed once there is a diagnosis of Graves Disease - a poorly understood AI disease for which there is no cure and all this treatment does is semi-block your own new daily thyroid hormone production from rising higher and higher - while we wait for your immune system to calm back down again and hopefully your thyroid return to it's normal set point - without the need for any drugs - and this phase of ill health - just a blip.
The NHS generally allocate a treatment window of around 15-18 moths with the AT drug - with follow up blood tests every 6-8 weeks and as your T3 and T4 start to fall back down the ranges, symptoms are relieved and the AT drug dose titrated down accordingly to try and keep you ' ticking over ' with a T3 and T4 in the range at around mid point with you as comfortable and symptom free as is possible.
We do now have some research you might like to read / keep -
If you diagnosis is Hashimoto's - this is not treated with Carbimazole - as the hyper episodes are transient and your T3 and T fall back down into range by themselves - but longer term this AI will continue to attack and disable your thyroid and you will ultimately become hypothyroid and needing to be prescribed thyroid hormone replacement.
When the thyroid is under attack from the immune system there can be some overlap in the antibodies found - but Graves treatment takes precedence as Graves is said to life threatening if not medicated.
So, Graves antibodies are generally written as a TSH Throid Receptor ab or a TRab / TSI - and we need a reading over the range - and for Hashimoto's we generally see a TPO / TgAB - over range :
The most well rounded of all I researched is that of Elaine Moore's first book - Graves Disease A Practical Guide - plus of course now - her Stateside website - elaine-moore.com
For Hashimoto's many forum members follow the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmcist.com
You will also find Thyroid UK - the charity who supports this forum holds a wealth of information about all things thyroid for you to dip into as and when you feel able - thyroiduk.org
There is a lot to get your head around, especially when physically and mentally exhausted - so just go 1 step at a time - and let's start with the medical evidence which is the antibody blood test + the TSH Free T3 and Free T4 blood test results and ranges at diagnosis.
If you have on line access to your medical records held at your local surgery I would think the above easily found - and if happy to share with forum members we can explain in a bit more detail what it all means - and it is now your legal right to have this access - so if not up to speed - just ask the receptionist at your doctors for the necessary form to complete.
We can all read what is being written so there is no need to keep repeating yourself -
All you will ever write on this forum and all your replies is stored under your Profile Icon - and this sits alongside My Hub - Chat - Post - Alert - Menu action bar top right on my laptop on this screen.
Every forum member has a profile - just press their icon which sits alongside anything they may write :
If you wish to reply to someone in particular - make sure you reply using their reply button which sits within their reply to you - as then they get notified they have a message to come back to read and their name should automatically appear as you start writing to them - as we don't intentionally not answer questions - just some days the volume of questions is such - that it may not be immediately.
I just want to add that don’t let your doctor pressurise you into having RAI or your thyroid removed. You might go into remission as I have and I still have my thyroid 15 years later. I know of so many people without a thyroid who are struggling to regain their health after doing this. Doctors want you to become hypothyroid because they find it easier to treat than Graves’ or hyperthyroid. The first thing my consultant endocrinologist said to me was that I should have RAI to kill my thyroid. Sometimes you have no choice because of thyroid cancer. A lot of people do well on levothyroxine but some don’t and this is one of the reasons this forum and many others exists to support people in their thyroid disease journey.
thank you Lora I won’t be pressurised in to RAI removal , ps can you actually get a GP appointment ?
as It’s like winning the lottery down in Cornwall
I have contacted my endocrinologist and waiting to hear back from him to as why I am feeling worst whilst taking Carbimazole 20mg !
When do you actually start feeling normal ?
Balanced
And I have only just begun this journey .
I’m worried as feeling this way stops you living a normal life without fear of anxiety , heart pounding like your going to collapse infront of people !
The feeling of not being in control of your body and mind working over time and ohh yes lack of sleep 😴 I never realised that an over active thyroid could be so debilitating!
We have about a months waiting time here. They are always messaging me about Covid,flu and shingles jabs because I am in my 60s. They never ask about my thyroid I just get an occasional mental health review even though I don’t suffer with mental health. The NHS is broken both my husband and I used to work for them and he was a hospital manager. We have watched the decline and I’m afraid I didn’t clap for them during covid. I have been let down by them so many times now I don’t really trust doctors. I actually worked alongside both doctors and nurses during the 80s. I worked in a hospital pharmacy.
I had no idea that Graves’ disease sufferers had high ferritin. As I have said before I have high ferritin I thought it was because I no longer had periods or because I had inflammation in my body
Can you direct me to where this information is please?
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Thus it is concluded that the increase in serum ferritin levels in patients with hyperthyroidism may be due to the direct action of thyroid hormones on its synthesis, while in some cases complicated with anemia impaired iron utilization
That is reassuring because I thought I would have to give blood to lower the levels. I am going to have a blood test after Christmas to check all my levels.
I have just looked again at your results and I don’t think you have Graves’. My TSH was 0.002 when I was first diagnosed and T4 and T3 were much higher. I will have to dig out my original results from 15 years ago to see what they were
Lora . we are sure it is graves because there is a positive TRab result ( Thyroid Stimulating Hormone Receptor antibodies)
it is the one written as "TSHab 5.07 ( graves) " on the list.
the lab range is not shown , but i'm certain that 5 is high enough to be a strong positive , lab ranges for TRab are usually something like 'less than 1.5' ish.. or at least all the ones i've seen are about that .
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