Hi all, I've been reading many posts since my Rheumatoid Arthritis diagnoses in 2020 and have found invaluable information on many topics and been very impressed by the supportive outlook everyone has.
So thought I'd ask for some advice as I'm seeing my GP tomorrow, I was told I have subclinical hypothyroidism in Jan 2023 but was informed that no treatment was required at this point and in fact the gp (seeing different one tomorrow) was quite dismissive.
When having my last blood test in May 2023 I followed the advice found on here although I'm not on any medication for thyroid issues i.e test no later than 9am etc, other previous tests done later in the morning.
Sorry for my first, very long post but I've struggling to understand what my results mean and what to ask my GP tomorrow. Can anyone help please?
I hope it's easy to follow, I've started with the first blood test that showed an issue and added subsequent tests in chronological order.
Levels between 25 and 50 nmol/L suggest insufficiency.
A previous blood test ordered by my Rheumatolgist in 2022 showed a Vitamin D deficiency for which I was prescribed which helped and so now I take a supplement.
TSH needs to be nearer 1 and t4 needs to be in upper quadrant.Both of your readings are nowhere near.My TSH was 8.04 and I felt awful.Im below 1 currently.Be firm with the GP don't let them fob you off with painkillers or antidepressants.Most GP's mine included only take action if the TSH is over 10 or so(ludicrous)They should listen more to patients symptoms rather than just read from a computer screen.Good luck with your Docs appointment.
Thank you for all your comments and advice, it's so much easier to understand here!
I've been taking:
Vitamin D3 25ug (1000iul) recommended by local pharmacy and Pink Tribe Liposomal Vitamin B complex for over 2 months, I stopped the vit b several days before the last blood test.
I have several issues going on so it's confusing to know what is causing what! Hopefully I'll be clearer after seeing the GP later this morning.
I am reluctant to take any more medication as I take many meds for the RA and other issues but I want to feel well again! Quite overwhelmed at times with all the health challenges over the past 3 years!
Will look to have private blood tests to monitor and follow improvement in vitamin levels.
So how long have you been taking just 1000iu vitamin D
Suggest you change to vitamin D mouth spray and increase to 3000iu per day
Retest in 2-3 months
B12 very low especially considering you have been supplementing
You definitely need separate B12 as well as daily vitamin B complex
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
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
Hi I've been taking Vit D for at least 9 months as my Rheumatolgist picked it up from the regular blood tests I have due to the Rheumatoid Arthritis. Thank you for the links to Vit B etc, I'll definitely look to purchase them. Do you have a recommendation for Vit D spray, can be so hard knowing what's a good source.
I've been a vegetarian since the 70's so that's probably a indicator for the deficiency.
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, (but must be four hours away from levothyroxine, assuming you eventually get levothyroxine prescribed
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 and add a separate vitamin B Complex after a week
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 several times a week
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
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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Wow lots of useful information to read/listen too, one of the articles described almost exactly symptoms I have been experiencing "fatigue, brain fog, muscle and joint pains, weight gain, headache, dyspnea, ....... Over time, the patients have often received a spectrum of diagnoses and corresponding treatments: subclinical hypothyroidism, fibromyalgia etc."
I will get a full iron panel test done, if GP unwilling then I'll use one of the suggested links.
I saw the GP yesterday who was very good and listened to my concerns. We discussed best way forward and decided to improve vitamin levels and re test in six months especially as last TSH had decreased, I'm happy to do this especially after reading the articles you shared Slowdragon and Tattybogle plus all the other advice given by others.
It was encouraging to be listened to and see that she understood my frustration at the change in my life due to health issues, she was very supportive.
Thank you all being responding to my concerns, I do feel more in control and have a better understanding of the way forward.
When TSH is over range but under 10, and T4 is in range ( 'sub clinical' hypothyroidism) then NHS guidelines say GP's ' can consider' treatment with levothyroxine . the requiirements are:
2 over range TSH results, taken 3 months apart. (to show its not a self resolving issue)
and
Symptoms of hypothyroidism.
The decision whether to treat 'sub clinical' hypothyroidism or not , is dependant on whether symptoms of hypothyroidism are causing you any problems or not .
(if thyroid peroxidase antibodies (TPOab) are over range ,this helps convince them to start levo as it shows treatment is likely to become necessary at some point anyway.... but raised antibodies are not a requirement for starting levo).
The fact that you do not have positive thyroid antibodies , and that your latest TSH is a bit lower than the last one may make the GP a bit more cautious about starting levo.
negative TPOab does not totally rule out autoimmune hypothyroidism , some only have TGab, but NHS don't usually test those, (and a few autoimmune cases don't have either sort)
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
p.s just noticed the bit about 'adults under 65' yrs old in the guideline.....it depends on the attitude of the individual GP, but your age could be used as a reason to not give you levo unless your TSH goes over 10.
Thanks Tattybogle very useful and helpful information. I will be 70 in August so understand drs reluctant to prescribe and am happy not to be but to be monitored as I'm on many other meds as said previously, just want to feel well again even if just a bit and have the GP listen to me. At my last appointment he wrote in my notes that he'd asked me certain questions and examined me when in fact he never did and didn't even look at me just looked at the computer screen! It's frustrating to say the least. Hopefully the female GP I'm seeing later will actually listen and maybe even look at me!! 😁
If that’s what he has written on your notes you must refute them otherwise they get away Scot free and will happily do it again. Can you take someone with you to your next appointment? That will make it harder for your GP to dismiss your symptoms.
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Vitamin D advice please.
