In February this year, I had heavy periods and I was passing large blood clots. I went to my Dr and found out I may have a uterine polyp. The Dr did blood tests to find out if I was anaemic from the blood loss (turns out I have low iron but not anaemic) and found out I have hyperthyroidism. They have prescribed 20mg of Carbimazole.
I was researching my condition and decided to check my blood test results on the NHS app to find out if I have Graves’ disease. I then found out that in 2018, a blood test showed my thyroid was abnormal, yet the Dr chose not to do anything about it. On my file, there’s a box saying “what you need to do”, to which the Dr just wrote “other”. I also found out there was another blood test result from 2019 which shows my thyroid was abnormal, and again, they didn’t do anything about it and wrote the same comment (it was the same Dr as in 2018).
I am obviously infuriated that I was unknowingly sick for 6 years. I’m terrified of the long-term implications of it having gone untreated for so long. I’m scared and confused and I don’t even know what to do or where to go from here. The Dr just prescribed the medication and didn’t give much direction.
Is there a special diet that I’m now supposed to eat? How should I change my lifestyle? Will this affect my chances of pregnancy or birth at a later stage? Am I going to die? Any and all advice would be greatly appreciated. Thank you very much.
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LC18
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One of the very experienced admins will come along, I am sure but I want to reassure you that you are not going to die from hyperthyroidism. Your doctor is hopeless and if I were you, I would change as soon as possible.
Like you, I was unwell for months and had numerous tests and saw various consultants but nobody suggested hyperthyroidism.
Eventually the head of my practice looked at me, checked my heart that nobody had bothered to do and said “ I think you have an overactive thyroid”. He used blood already at the lab from a previous test to let me know very quickly that he was right. I was as shocked as you are but fear not. You have come to the right place and will get wonderful advice from kind members. Take the medication as directed and be aware of how you are feeling, because I found it hard to get the right balance. Make a note of all your blood tests and start to become your own doctor. You will find that mostly you will only need the help you receive here, as doctors generally are lacking in knowledge of overactive thyroid. You will need them to do blood tests however, to see how the medication is affecting your levels. Read all you can and ask questions. I hope you soon begin to feel better.
Looking back at these blood test results you have found can you share what you have found with forum members.
Do you have a TSH -T3 - T4 reading and a range alongside these numbers ?
What took you to the doctors at these particular times and what was said was wrong ?
If there is no obvious neck swelling or issues with your breathing or swallowing there are 2 auto immune diseases that tend to get diagnosed when your immune system is triggered to turn on your body and attack the thyroid rather than defend it.
Both Graves an Hashimoto' are AI diseases and the only way to tell these 2 apart initially is though which antibodies were found over range and positive in your blood test at the time.
Do you have any readings there with numbers alongside saying TPO - TgAB - Trab - TSI ?
drs often treat all low TSH as hyper and assume Graves.
With Graves thyroid levels reach 3x or more the normal range & feel very unwell.
As your abnormal readings go back several years I suspect your TSH was low but your FT4 & FT3 were not worrying high which is why your doctor didn’t treat.
You should have however been informed and had further follow up.
I was started on 20mg carbimazole - it is low for a starting dose. If your FT4 & FT3 are not very high a low dose is all that is necessary to bring FT4 & FT3 in range.
I also found out after a year after starting treatment I had abnormal results near 5 years before - which were not followed up.
You mention that you were “unknowingly unwell” rather than “unwell & untreated” & this was my experience too, I would not have said I was unwell, which with hindsight I see I had some symptoms which I’d explained away & my body had compensated as the level gradually rose.
It’s very common that autoimmune thyroiditis (Hashimoto’s) causes fluctuating transient high levels which ultimately become under active.
There been many reports of people being diagnosed with Graves who need to stop antithyroid treatment within a few months & then become hypothyroid.
I have a nodule which over produces which is not autoimmune.
Graves causes continuous, often very high & is confirmed with Trab or TSI antibody testing.
Have any antibodies been tested? I suspect you haven’t, as usually specialists can arrange Graves antibodies test.
Your GP may have tested TPO ab & TG antibodies which appear in both thyroid autoimmune conditions and treated as Graves ad TSH low & FT4 high.
If your thyroid levels have been very over range for many years ask doctors to arrange a bone density scan & heart check.
If they haven’t been high but TSH low the risk is not the same.
Has your GP arranged a specialist referral? Sometime this takes a while to come through, your GP can arrange thyroid function which should be within 6 weeks of starting carbimazole.
The dose usually needs adjusting to keep you in range.
I was given propranolol when first started in carbimazole then the specialist stopped it abruptly when halving the carbimazole. This triggered migraines as should always been reduced slowly. I wouldn’t have started propranolol if I had known as I hadn’t reported severe palpitations & this medication would relieve such symptoms but it would only help with symptoms not treat underlying cause.
Ideally anyone who starts antithyroid treatment is seen by a specialist straight away, but this isn’t what happens unfortunately. GPs see low TSH, prescribe carbimazole, sends off referral & passes all responsibility to specialist. In the mean time checks that should be happening are not.
We can demand action, test & ultrasound & other scans all we like, but in reality it takes months for answers.
Untreated hyperthyroidism does have immediate & long term consequences but it’s not known how severe FT4 & FT3 levels are. You are assuming they are typical Graves level high, but this might not be the case.
Until it’s known what level the FT4 & FT3 are & if the -correct- antibodies have been tested it should be of equal concern they do not have a continuous high thyroid levels.
Propranolol or Bisoprolol would not mange hyperthyroidism, they can be taken to help relieve symptoms commonly associated with severe hyper but would do nothing for underlying hyper.
As it’s not know what level the FT4 & FT3 are it should not be be assumed 20mg is not a sufficient dose.
It’s entirely possible to have low TSH and low FT4 & FT3 in which case any dose of carbimazole is not appropriate & doctors do prescribe based on low TSH.
Getting FT3 and FT4 into the reference range *should* the aim, but medics want the TSH to rise into range which it why they are willing to allow low levels.
Unless thyroid levels are very low for a long time it is not considered life threatening which is why doctors will tell you it’s “better” to be low than than high. - I can image if you’ve been very hyper for months, symptoms might feel more manageable having low level briefly. But that’s not my experience.
Either end is debilitating. Recovering from hypothyroidism can take months. If very hyper there is more immediate risk but doctors are less likely to be held accountable for hypothyroid levels.
I’ve been referred to Endocrinology but the appointment isn’t until the 17th August.
In the meantime, I’ve taken your advice and have ordered and started taking supplements alongside my medication. I’ve also booked a blood test for 6 weeks after starting medication.
Please see attached for my blood test results. The 2018 and 2019 results don’t show anything in detail.
Again, thank you so much for all your help. I would be completely lost without it.
Below 30 Ferritin is very low. Ask for iron panel (or arrange privately)
Thyroid function test Serum TSH level 0.50 mu/L [0.55 - 4.78]; this is below range but still detectable.
Serum free T4 level 30.2 pmol/L [9.5 - 22.7]; FT4 over-range. At 156.82% of range.
There’s no FT3 result which is disappointing, FT3 could be low / in range / over range & carbimazole will lower both.
20/3/23 Gonadotrophin level Serum follicle stimulating hormone level. - The result needs to be looked at depend on point of cycle.
Your white blood cells are all in range so doctor wouldn't be concerned. carbimazole can rarely cause a drop in Neutrophils.
Was any other blood count taken? haemoglobin/ red blood cells?
Always best to test nutrients to be better informed what level of supplementation to consider. Don’t start many new supplements & medications in 1 go. Leave a week or 2 between incase you react to an ingredient.
Subsequent test will help decide if carbimazole needs adjusting. I started on 20mg my FT4 was slightly lower but I knew my FT3 was disproportionately high nearing double range. Within 2 months levels were borderline low.
Ask if thyroid antibodies can be added to test. GP can test some types but may not be able to test all of them.
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies) Both signify thyroid autoimmune affecting thyroid - can be either under active or over active.
If hyper Graves suspected this can be confirmed by
TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves)
Thank you so much PurpleNails . Sorry, what does 156.82% of range mean? And where does it need to be for it to be normal?
Do I need to ask for an FT3 test? What does the cycle for Gonadotrophin level mean?
I’m confused because both full blood counts from 2018 and now say that I have a “differential white blood cell count” and that the result is “abnormal”?
Also, I don’t think they tested haemoglobin/ red blood cells.
I’ll ask about the thyroid antibodies test when I get my next blood test on the 2nd May. Thank you! Sorry about all the questions, I don’t really know what’s going on and this is all very overwhelming
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