I know I do not have exact figures so we’re second guessing a little here but wondering if anyone has any experiences that might help me. I’ve been under active since 2006 with autoimmune antibodies (dad and aunt also under active). I currently take 150mcg Levothyroxine. Last April I had a blood test as I was suffering with difficult joint aches and pains. TSH was 0.3 (range 0.1 -3.5). Thyroid was declared to be fine so aches unrelated (I’ve never seen T4/T3 results or any vitamins and get all my results online - only ever seems to show TSH). So for almost a year I’ve been trying HRT to see if it helps the aches and to some extent, it did but I kept having to increase the dose as it seemed to “wear off”. Today I got my yearly check up results back and had the nurse on the phone as my TSH was 0.08 (range 0.1 - 3.5). She is questioning over medication and wonders what, if anything, I might be doing differently. 2 things spring to mind- the first is an interaction with the HRT (although I always take the HRT at night and the thyroxine in the morning). To be fair, I feel ready to stop the HRT as I don’t feel it is doing the job I started taking it for and I have noticed an increase in my BP since starting it and also the return of hormonal migraine auras. The second thing that has changed is that I am much more careful to take the thyroxine with water and stay off my cup of tea for at least 30 minutes. I’ve been following this regime more reliably for about 8 months. Rather than make any quick decisions, she wants me to talk to their clinical pharmacist tomorrow to come to a decision as to whether to drop the HRT only and retest TSH in 6 weeks or whether to start making a reduction in the Levo too. My primary school science brain tells me to change only one thing to work out what’s going on but I would be very interested to hear if anyone else has dealt with similar. Sorry for the long post and lack of detailed numbers but grateful for any thoughts.....
Advice on under active thyroid to potentially o... - Thyroid UK
Advice on under active thyroid to potentially over medicated..
Just testing TSH is completely inadequate
Never reduce dose based just on TSH
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
What vitamin supplements are you currently taking
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Come back with new post once you get full test results
Yes, thank you. The test was only yesterday and was exactly how I organised it (have never done this before - always taken Levo before the blood draw). Obviously, the pharmacist may not immediately recommend a reduction and I understand it’s nigh on impossible to get the tests you say on NHS through my surgery. But at least if she does suggest changing Levo, I can go down the route of asking for further tests beforehand. I’m currently sat worrying though as I genuinely have felt a jittery/fluttery chest for the last couple of weeks (which is much worse tonight - probably due to anxiety over these results) but now I’m worried it might be “hyper”. I’m not normally an anxious person I promise!! Supplements that I’m taking are bog standard Tesco vitamin D tablets alternating between 1 and 2 a day and also coEnzyme Q10 (ubiquinol) to try to help with aches.
Then suggest you consider getting a FULL thyroid and vitamin test
Anxiety is common hypothyroid symptom....can be too much Ft4 and low Ft3
Just vitamin D test here
GP will only prescribe to bring levels to 50nmol.
ouh.nhs.uk/osteoporosis/use...
But improving to around 80nmol or 100nmol may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, you may need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, but with hashimoto’s we frequently need higher dose than average
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
HRT frequently increases need for higher dose of levothyroxine and/or affects conversion of Ft4 to Ft3
I agree with SlowDragon 's advice. Many medical professionals still believe that the TSH result gives sufficient information but it is from the pituitary gland and rises if the thyroid gland begins to struggle. It reduces when we're produceing sufficient T3 which is the active thyroid hormone required in all of our T3 receptor cells and brain and heart contain the most.
Quite a number of researchers have proven that many hypothyroid patients recover when on a T4/T3 combination. The aim being a TSH of 1 or lower with both Frees (FT4 and FT3) in the upper part of the ranges.
I, myself, only improved on T3 alone.
When you have your blood test for thyroid hormones, do you allow a gap of 24 hours between last dose and test and take it afterwards, with one full glass of water and wait an hour before eating? Have you had B12, Vit D, iron, ferritin and folate tested?
Excerpt from above link:-
"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.
The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed.
p.s. In UK, the BTA et al made False Statements about NDT in order to get it withdrawn, despite it being in use since 1892 *in different forms) but it saved lives from then on.
drlowe.com/thyroidscience/C...
Yes, my blood test was taken as you describe. No other vitamins have been tested. I understand what you’ve included about the inadequacy of simply using the TSH test (and thank you) but how on earth does one go about persuading the GP to offer anything different. I so wish I could be on the end of a telephone demanding different tests or going to the surgery frequently but like many people, I’m trying to hold down a busy job, run a home, plan a wedding etc etc..... it’s so hard to get someone to see when they truly believe they are right and have x years of medical training to prove it. 😰 Thank you for your information though......
You would not expect, in this day and age, that the diagnosing and treatment of hypothyroidism is worse than before any blood tests were introduced.
People recovered and didn't die after 1892 onwards due to being given thyroid hormones from pigs' thyroid glands. No blood tests then and only NDT (natural dessicated thyroid hormones). This is still prescribed in different forms and is successful for many hypo sufferers.
I had to diagnose myself - I went hither and thither not understanding why I was becoming so very unwell. I had never heard of hypothyroidism and I paid doctors - none gave me an accurate diagnosis and eventually I had to do it myself. If you click on my name you can read a little of my journey. It was through help/advice from members which led me to good and energetic health. Of course I pace myself.
The fact, on this forum, is that many of us have taken our own health into our own hands and have benefited from it.
All our better doctors who were trained in clinical symptoms have now retired or younger doctors prevented from prescribing what they would prefer to give to the patients. Their hands are now tied.
Levothyroxine is T4. T4 should convert to T3. T4 (levothyroxine) is an inactive hormone and has to convert to T3 (liothyronine). We have millions of T3 receptor cells and heart and brain have the most.
NDT contains, T4, T3, T2, T1 and calcitonin.
We also have to make sure that B12, Vit D, iron, ferritin and folate are optimal too.
There’s well over 106,000 members on here, in large part because current testing and management of thyroid condition is abysmal
You need Full testing, that frequently means getting tested privately
Stop the HRT and retest in a few weeks and see if it's really is the HRT. I take thyroid meds and HRT many hours apart I haven't had issues but I took Cymbalta for chronic pain and this drug 100% messed with my thyroid levels and never took it anywhere near my thyroid meds.
Quick update... after 2 days of telephone ping pong and talking to a nurse and pharmacist (not got as far as the GP!!), I was asked “What I’d like to do”..... so the upshot is that I will stop the HRT(as it doesn’t seem to be helping the aches and pains I started it for) and retest in the middle May. The pharmacist agreed with me that it would be a good idea to get the FT3 and FT4 tested as there is no evidence in my records of them having been done in the 14 years I’ve been hypo. I’ve also said I would like vitamins testing. No tests can be done apparently any sooner as the Lab will refuse tests within a certain time of a similar test!! However, I am under no illusion that I will rock up for a test in May to find the form has been completed for TSH only! I need to get my big girl pants on and be ready for a bit of a battle!
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