Hi all, I am new here and have found reading through all the information I’ve found here invaluable. I have recently been diagnosed as having hyperthyroidism- my story is in my bio. I have my first endocrinologist appointment this week and I’m not sure what to expect. My GP wouldn’t prescribe Carbimazole without me seeing Endo first, she said I wasn’t a straight forward case 🫤 as she isn’t sure if I have an autoimmune condition (my TPO abs were 305-ref range is 0-8.9) or if the fact I have had an ultrasound that showed 2 cysts in my lower thyroid lobe is responsible. Either way I’m finding it all rather confusing and as I’m just starting out on my journey I thought I’d reach out and say hi and if anyone has any advice prior to my appointment or questions I should ask please respond.
I guess I should post my results….
Tsh 0.02 (ref range 0.38-5.33)
T4 18.4 (ref range 7.9- 14.4)
T3 7.5 (ref range 3.1 - 6.8 )
I am awaiting the results from my TRab test
hope I haven’t waffled on - Keri 😬
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Keri41
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So, as your Free T3 and Free T4 are slightly over the range - and since you have positive over range TPO readings this looks like Hashimoto's Auto Immune thyroid disease -
but it could be cysts causing these higher than ' normal ' readings ?
and once the TRab result comes back - this will rule in or out Graves Disease and if a positive - treatment for Graves takes precedence over Hashimoto's and some people have these 2 AI diseases running together.
There is no cure for either Auto Immune Disease - Graves is considered life threatening if not medicated with an Anti Thyroid drug - whilst Hashimoto's attacks and progressively damages the thyroid with you becoming hypothyroid and needing thyroid hormone replacement T4 - to support your damaged, failing thyroid gland.
I don't think I've ever seen a ferritin reading this low - this alone must be leaving you totally exhausted - have you had the infusion and feeling any better ?
If your Graves Disease antibody read comes back positive the NHS generally allocate a treatment window of around 15-18 months with an Anti Thyroid drug- such as Carbimazole or Propylthiouracil ( PTU ) -
all this does is simply ' buy you time ' - while we wait for your immune system response to calm back down again from whatever has triggered your immune system to malfunction -
and of course the question for you is - why you, and why now and what has triggered this phase of ill health ?
The AT will semi block your new daily thyroid hormone production and slowly your over range T3 and T4 will fall back down into range with the hope that this treatment offsets the worst of the symptoms being tolerated -
and hopefully, given enough time, as your immune system calms down so will your thyroid and reset itself without the need for any drugs.
When metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food - no matter how well and clean you eat - and it is important to keep your core strength strong and solid -
and if ferritin, folate, B12 and vitamin D are not maintained at optimal levels these can unnecessarily compound your ill health further -
and we can advise on blood test results as some NHS ranges are too wide to even be sensible.
We do now have some research which maybe appropriate depending upon the TRab results;
Thank you so much for taking the time to reply and with such clear information, I really appreciate it.☺️ It’s so reassuring to be able to seek knowledge and comfort from others who are/have been through similar. I shall update you when I get my TRab results (they seem to be taking weeks to come back!) I have my endo apt Thursday and my haematology apt next Monday for an infusion. I’ve gone from being fortunate enough to never need to see a consultant or have anything too troubling wrong with my health to starting the year off with multiple issues! Onwards and upwards though. Kindest regards Keri
Okey doke - update us after the appointment as your endo likely has the necessary blood test results.
Ask for copies of everything - and if not registered for online access to your medical records held at your primary care provider - ask the receptionist for the forms - and do it - as then you can view all your results at your convenience and share them here if they need explaining to you.
Start a new post with new information as the forum gets very busy and we try to answer as fully as possible within around 24 hours of the new post landing on the forum and answer as fully as possible within that time scale.
I have had low normal readings in the past on/off and these were put down to the fact I’m a vegetarian with heavy periods. I have been told as I’m not technically anaemic it’s not really a concern. This is the lowest they’ve been though. I have also had 2 courses of B12 injections over the last 6 years so I do have a yearly check on those levels. I’m hoping the infusion will help with tiredness etc.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week if not daily
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I’m a vegetarian with heavy periods. I have been told as I’m not technically anaemic it’s not really a concern. This is the lowest they’ve been though.
Heavy periods are frequently a symptom of low iron/ferritin
Please add actual iron panel test results
my haematology apt next Monday for an infusion. I’ve gone from being fortunate enough to never need to see a consultant or have anything too troubling wrong with my health to starting the year off with multiple issues!
Extremely low iron/ferritin increases risk of developing thyroid issues
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
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 264l
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.
Retest iron panel 3-4 months after infusion
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
My last ferritin/fbc blood test was Dec-that was when I was referred to haematologist for an infusion as can’t tolerate oral iron. I have also started tranexamic acid to reduce monthly loss through menstruation in hope that once topped up with infusion a multivitamin with iron in will do in maintaining levels.
I don’t know what an iron panel blood test is sorry. I’ve only ever had fbc (always normal) and ferritin. I never realised how low my ferritin level is or importance of it!
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