Hi everyone I wonder if anyone is able to give me some advice on my bloods, the drs aren't really communicating saying I'll have a retest in 3 months. I had blood tests done 18months ago for my symptoms and was told my thyroid was borderline under active they retested after 8 weeks (at my request) and was told It was normal, I could have a retest in a year. Had a retest and they said it's 'heading towards being under active' and put me on 25mcg of levothyroxine. I asked for a copy of my blood test results as after 8 weeks I'm still feeling the same, they came back as:
T4- 11.8 pmol/L
TSH-31.3 mIU/
Antibodies - 302 kU/L
The doctors are obviously the experts but I was wondering does anyone else have any similar results and how long it took for them to feel better.
Thanks in advance
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Lmcb2024
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I think we can conclude from your treatment, or lack of, that your doctors are certainly NOT the experts here!!
Have they increased your dose as currently you are on a child or starter dose for aged?
Your very high TSH shows you are very Hypo and if you are able to add the ranges from the test very likely your fT4 is below range, raised antibodies shows you have autoimmune hypothyroidism
Your TSH is worryingly high and needs immediate, proper treatment.
Your antibody results show that you have autoimmune Thyroiditis, and from your recent TSH it has triggered Hypothyroidism.
When my TSH hit 37, my doctor immediately put me on 100mcg Levo (not recommended for many as a starter does). 25mcg will do absolutely nothing.
I'm sure others can point to the NICE guidelines on how doctors *should* act under these circumstances. 25mcg is considered a "starter" does for older patients or those with pre-existing heart conditions, it should be raised immediately.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
75kg x 1.6mcg = 120mcg as likely eventual dose Levo
As your dose levothyroxine increases up you may find your weight gain may stop
also getting vitamin levels optimal should help
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
The first thing I learned on joining here is that catergorically doctors are not experts, if they were we wouldn't have so many members who've been badly let down by so called experts 😄.
Unfortunately thyroid disorders are poorly taught in Med school, poorly understood and even more poorly treated. Its why so many of us turn to forums like this to get better.
Don't just blindly believe that because sadly it has been proven not to be the case. Just read the posts on here....and yours can be added to the list.
A starter dose of 25mcg is for the frail, you are only 39!!
50mcg is the usual starter dose
You should at least have been tested again after 6 weeks and your dose increased by 25mcg
SlowDragon has given you good advice re dosing.
No reference range given but your FT4 looks low....we aim to have both FT4 and FT3 roughly approaching 75% through the reference range
You are not heading towards hypothyroidism with TSH 31.3 you are clearly hypothyroid....we aim for a result of 2 or preferably under.
The high TSH ( a pituitary, not a thyroid hormone) is a message from the pituitary to the thyroid that it needs to produce more hormone because levels are too low....the message is loud and clear!!
You need more replacement thyroid hormone!
Which thyroid antibodies were tested.... TPO or Tg?
Thyroid autoimmune disease ( high antibodies) is a common cause of hypothyroidism.
It is also vital to optimise vit D, vit B12, folate and ferritin to support thyroid function and T4 to T3 conversion
Weight gain is an indication that FT3 is low. Metabolism is supported by T3 and if the level is low then metabolism runs slow, with the result that fewer calories are burned and weight gain results..
You need more levo but your GP has failed to understand this...no wonder you still feel the same!
These are my results. I don't take any vitamins as of yet will go out and get a good multivitamin today. Thank you all so much for your help and advice I really appreciate it
Thank you, I wouldn't really know where else to go. All communication since testing has taken place over email but at least I have a phone call next week with a GP. I don't really feel there is much more I can do apart from hope that they will listen or at least provide some sort of explanation of the treatment plan
I don't know what has happened to some of these doctors. My surgery is very good, I was there this morning for uti treatment and also frozen shoulder and the GP listened and acted....as they all should do. Just had a follow up call with an appointment for a steroid shoulder injection next week. They can do it if the will is there!
Make a list of all the points you wish to make during next weeks call and emphasise how undermedicated and awful you feel. Symptoms are supposed to be a major part of diagnosis.
Diagnosing by phone/ email is a job half done. Today's med students are not taught enough about thyroid disease as is evidenced by the posts on this forum.
You must be given more levo if you are to improve....they should know that!
Don’t take any vitamin supplements without testing FIRST
multivitamins NEVER recommended on here.
Most contain iodine that can make thyroid issues worse.
Get vitamin D, folate, ferritin and B12 levels tested and come back with new post once you get results for advice on what needs improving and how to do so
Thank you for your advice I took one earlier but won't again. Have contacted doctors re another blood test. Cheers everyone nice to feel you aren't alone x
Your experience is far too common. As I said hypothyroid disease isnt taken seriously, there is this idea that just taking a little white pill everyday will cure all your ills.
It may shock you to learn that during training doctors spend just one afternoon learning about the endocrine sysyem, of which thyroid, is only a small part.
This is the busiest forum on HU by far, which should tell you we have a lot of members who find their thyroid condition very poorly managed. Its not just the NHS either, but seems to be true the world over.
Yes these were my results when I was sent for an antibody test a few days after I started levothyroxine, iv now been on it for 8 weeks and asked for a retest to see if there has been any improvement as I'm feeling pretty rubbish in the hope that I could get a higher dose of needed (tho I'm aware things take time to work) I was told no my retests won't take place to end of October. But when I said I had sought advice and that the dose I'm started with is usually advised for children or over 65 she said a Dr would ring me back next week to discuss my medication but not to increase
End of October would be 12 weeks since starting on half standard starter dose
So you could test yourself privately now including vitamins
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you, do you think it's worth private testing them taking those results to the Dr to get an increase of levo?? I just think they aren't going to give me any increase even if I do this they don't seem to want to shift from the 12 weeks
Your GP is either ignorant of guidelines or being excessively cautious
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Some people need a bit less than guidelines, some a bit more
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.
The British National Formulary (BNF) recommends:
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people, such as over-50s or people with heart disease, may start on a lower dose.
Generally waiting 6-8 weeks before retesting is better than 3-4 weeks…..that’s too soon
But waiting 12 weeks when on only half the standard starter dose is unnecessary and likely to result in symptoms getting worse
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