hi, this will be a bit of a long one sorry. I am really confused and don’t know whether to accept my gps answer or go private for a second opinion.
My issues started more noticeably in October last year when I started heavily bleeding and having long periods and very short periods of time of not bleeding. I saw my gp about this in January who sent me for an ultrasound and that was it, I requested a blood test as I was feeling extremely exhausted so she reluctantly tested.
TSH 0.14 mu/L (0.27-4.2)
Serum free triiodothyronine 4.9 pmol/L (3.1-6.8)
Serum free T4 18.6 pmol/L (12-22)
Serum ferritin 17 ug/L (10.0-300)
This prompted further testing done in March results were
TSH 1.4 mu/L (0.27-4.2)
TPO Antibody 1227 iu/mL (0.0-25)
Anti nuclear factor level titre >1:100 ana positive
T3/T4 weren’t tested
Now my gp got these results and told me I 100% have a thyroid autoimmune disease and he’s going to refer me to endocrinology. I’ve just had a response from them saying all my symptoms (exhaustion, headaches, frequent periods and bleeding) are not thyroid related, I’m fine and they have no interest in seeing me and I just have to have an annual thyroid blood test. I am genuinely struggling to get through the day, everything around me is suffering because I’m so exhausted and I feel like crap. Google says thyroid function can absolutely affect your periods, but the gp is telling me it can’t and basically no one knows what’s going on.
Now I don’t know what to do, whether to take the gp at their word or to book a private endo appointment. I don’t want to book it if there genuinely is no reason to do so as it’s expensive and I don’t want to waste anyone’s time. I’m hoping someone can give me some insight or advice on whether I need to take more steps to investigate thyroid or to drop it basically.
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Han99m
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The first thing you should know is that GPs know next to nothing about thyroid. The second thing is that endos are often worse! However, GPs have been told that endos are the experts - they aren't - and that they should refer to them. This complicates what could bed a simpler situation.
Your GP was right, you do have autoimmune thyroiditis - aka Hashi's - and with Hashi's levels can jump around a lot. The endo is wrong and your symptoms are pretty certain to have a lot to do with your thyroid status.
The problem with hypo/hyper symptoms is that they are non-specific - they could all be caused by many, many other things. So, it's difficult to prove a doctor wrong when he says your symptoms have nothing to do with your thyroid - which is a line they all trot out at one time or another when they just can't be a***d to find out the cause. But, thyroid hormone is needed by every single cell in your body to function correctly, so if there's not enough to go round, symptoms can occur everywhere and anywhere in the body and the brain. So, next time a doctor says that, just ask them:
which is the most likely scenario:
I have 36 different diseases, with one symptom each?
Or I have one disease with 36 symptoms?
Might shut them up for a bit even if they can't answer the question.
That said, looking at your results it doesn't seem that your thyroid has been damaged enough yet to show up in blood tests. Your FT3 is a bit low, but they don't know what that is. Your FT4 is high. And your TSH is within range, and that's all they really look at. The TSH would have to be at least over-range on two consecutive blood tests, coupled with high antibodies (and antibodies fluctuate) for a doctor to take any notice. So, I'm afraid it's going to be a bit of a waiting-game until you are hypo enough for them to take it seriously.
So, in the meantime, what you need to do is optimise your nutrients - low nutrients make you feel dire, anyway. Your ferritin is very low - ask your GP what he's going to do about that!That alone will make you very tired.
Do you have any results for vit D, vit B12 and folate?
Really appreciate the thorough response, thank you!
My b12 was 146 ng/L (180.0-1000.0)
My folate was 13.5 ug/L (>4.0)
Vitamin d was not tested but I had a vit d deficiency a couple of years ago took strong vit d supplements for 7 weeks and then have kept ontop of supplementing since then.
I am taking B12 supplements and due to retest in a couple of weeks with the view that if that hasn’t improved they’ll do the b12 shots instead, but that’s all they’ve really focused on.
I am vegan actually 😅 however been vegan over 10 years never had low b12 or iron or any other issues before and it’s been tested a few times over the years no change in diet or supplements really either.
When my ferritin was down at 22 - I was totally exhausted, very unwell and couldn't cope with much on a daily basis - I was 70 at the time and referred for a colonoscopy and endoscopy before I was allowed to supplement :
At the very least you need a full iron panel and testing for pernicious anemia before supplementing anything.
Thanks very much for your input I think I will have to see someone privately at this point I’ve seen three separate gps at my surgery and they’re not getting anywhere.
I'm trying to link you into other posts discussing low ferritin and B12 - but I don't know how to do ' links ' - I know - never mind - IT and me do not go too well together !!
Anyway -
Scroll up this page and on the right hand side there is a Topics section - dip into the Vitamins and Minerals - and there you'll find posts low ferritin and B12 readings and what should happen - as I'm getting frustrated with myself now !!
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
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
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.
I am 30, female. Thank you so much for the incredible amount of information, its going to take me a little bit of time to read through it all! I really really appreciate the input!
these 2 replies are what I was trying to find for you :
Take your time - there is so much to read and understand -
Your body is unique - and your overall health and well being not just one thing -
but the sum total of all the parts - and a fine balance :
Apart from all the above you do have high over range Thyroid Peroxidase - TPO -antibody readings - 1227 ( range 0.00 - 0.25 ) and this indicative of a thyroid auto immune disease commonly referred to on here as Hashimoto's .
It is very common to have food intolerance and gut issues with this AI disease and you need to have tests, while eating normally - though you have probably already ruled some of these out - for gluten, dairy, wheat etc.
Many forum members follow the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com
Your thyroid is liable to erratic swings in production - with you experiencing swings in symptoms - with energy and wellness. followed by bouts of tiredness and exhaustion - given time you will become hypothyroid and need the support of thyroid hormone replacement - T4 - Levothyroxine.
I’m sorry to bring this back again but I was just wondering if you know if I do an at home blood test can I take those results to my gp or will they dismiss them? I’m going to book a b12 test soon but they’ve only ordered a b12 one and they said I can’t request another test without a gp appt which I can have in 6-8 weeks and I want to test my ferritin levels.
Starting to notice I’m getting tight chested and feel breathless a bit so want to sort it out
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
exactly what B12 and B complex are you taking
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
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 5-7 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
Vitamin d was not tested but I had a vit d deficiency a couple of years ago took strong vit d supplements for 7 weeks and then have kept ontop of supplementing since then.
30 years of age is young, but keep in the back of your mind, in case the other things don't work out, that perimenopause can cause all the period and exhaustion issues you listed. Perimenopause can strike 10 years before menopause and although the average age for menopause now is 52, it can and does hit some women much earlier.
If you go to the balance-menopause.com web site you can download the Balance app to your phone and it will help you track and interpret your period issues. Great web site and free app that works.
Your ferret in level (iron store) is terrible and could well be contributing to your problems with periods, or rather like a chicken and egg situation, it might be caused by worsening periods and bleeding.
Definitely investigate. I believe one of my first serious symptoms was DUB - dysfunctional uterine bleeding. The reason was never found so labelled unexplained.
It got so bad I couldn't go on holiday or often leave the house. I ended up permanently exhausted and desperately anaemic (which causes exhaustion among other things).
In the end I had (likely) unnecessary major surgery. Thyroid issues were not investigated as TSH was fine 🙄
Going back I'd like to have been in your position as I hadn't even known there was a possible thyroid link. That was nearly fifteen years ago and I've finally won the battle to start Levothyroxine. You can see more in my biog. The untreated hypothyroidism has wreaked havoc on my body. At the moment a kidney function problem is being investigated.
Thank you for sharing and responding. I was offered an ablation as I’m sterilised anyway so wouldn’t matter about affecting my fertility but I want them to find the cause I don’t want to just put a patch on the problem and have other things going on in my body!
I’m so sorry you had to go through that but I hope things are finally improving now.
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Am I right in thinking I’m slightly hypothyroid? (Updated post)
Test results
NHS endocrinologist appt a waste of time as I expected - I just want to cry!
