Diagnosed in late 2017, was on 25mcg of Levo for ages, increased to 50mcg a year ago. GP told me after bloods last year no further action needed & I accepted that (really wished I hadn’t)
Recently decided this is nonsense as my symptoms have never improved. Huge weight gain over 3 yrs (6 st), v sensitive to cold, dry skin & hair, heavy menstruation, fatigue.
GP told me 8 weeks ago that TSH last July was 5.8?! She wasn’t my original GP & seems more open to taking notice of how I say I am feeling, she increased my Levo to 75mcg & ordered a follow up blood test which will be back next week.
I’ve had a private test done last week too.
TSH 2.64 (0.27 - 4.2)
Free T3 4.17 (3.1 - 6.8)
Free thyroxine 16.1 (12 - 22)
They also tested for antibodies and seem to suggest that they indicate Hashimotos
Thyroglobulin 230 (<115)
Thyroid peroxidase 96.6 (<34)
I consider myself to be reasonably intelligent but realise now I’ve not understood this condition fully, haven’t been articulate enough with healthcare providers and have passively accepted their treatment plan.
I’m not sure how to approach it next week but I think my Levo needs to be increased until I feel better or at least see some improvement.
I’d really appreciate any guidance any of you could give me. Thanks so much
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Don't feel bad about being passive for 3 yrs....... i've been passive since 2003! (not anymore though)
New GP sounds like she's doing the right thing so far, ie. increase by 25mcg and re-test 6-8 weeks) so you may be OK with her. Make sure she doesn't stop when your TSH is 'in range', but continues to increase /re-test until you feel well or tsh under 1 whichever happens first.
Be prepared for it to take a few months to get there.
First GP........useless..... deserves to have 75% of thyroid removed and not given enough thyroxine for 3 yrs while you twiddle your thumbs and say 'computer says normal' to see how he/she likes it.
Make sure NHS acknowledge and record your TPOab /TGab results (if they haven't already done it), which show Autoimmune Thyroid Disease. If they wont accept private test results get them to do their own.
Get your historic thyroid test results and ranges and keep your own records from now on.
Hope you start to feel better, (and more in control) soon
Most people seem to feel better when TSH is around 1 and frees nearer to the top of lab range so if it were me I'd increase levothyroxine by 25mcg and retest in 6 to 8 weeks.
You should also get vit B12, vit D, folate and ferritin tested. Very common to have low vitamin levels and this can cause symptoms that may be similar to thyroid hypothyroid symptoms and it can be hard to distinguish between them.
Both TPO and Thyroglobulin antibodies are raised. TPO antibodies indicate Hashimotos thyroiditis. TgAb can be related to Hashimotos and/or other conditions.
It may be worth getting other, ANA, antibodies checked out to rule out another problem.
Very common to have food intolerances such as gluten with autoimmune thyroid disease which in turn can cause temporary lactose intolerance. Slowdragon has good advice on gluten intolerance.
Once you have your vitamin blood test results, post here for best advice. Don't take the docs word for it that they are all, 'normal', they need to be optimal when you have autoimmune disease.
Thanks for replying to me. I hope they’ll do by vitamin tests. GP said she was only allowed to rest for TSH & I’d have to get t3&4 done privately. Might find the same this time
I think I'd complain to your MP in that you have been told to get your own Free T4 and Free T3 test privately. TSH - thyroid stimulating hormone - is not a thyroid hormone it is from the pituitary gland and rises if you need additional hormones.
If we don't feel well, we need to know the point where FT4 and FT3 are, so that an increase in dose can be made.
The aim is a TSH of 1 or lower with both Frees near the top of the ranges.
Do you follow this method when getting a blood test?
The earliest possible appointment - even if you book it weeks ahead. Fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards.
If you've not had B12, Vit D, iron, ferritin and folate checked, ask for these too as they have to be optimum.
You were very poorly treated and kept woefully under medicated
Good that new GP has increased dose of levothyroxine
Low vitamin levels are extremely common with autoimmune thyroid disease (Hashimoto’s)
You have Hashimoto’s, as confirmed by high thyroid antibodies
Ask GP to test vitamin D, folate, B12 and ferritin
ALWAYS get actual results and ranges on all tests
Come back with new post once you get vitamin results
Results show you are ready for next 25mcg dose increase in levothyroxine up to 100mcg
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test. This gives highest TSH and lowest Ft4
guidelines by weight might help push for dose increase (If GP reluctant)
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
So much useful info. I did mention to her that my weight alone would suggest I should be on a much higher dose (think that’s why she agreed it)
Did my private test & the one last week for GP late afternoon 🤦♀️ Didn’t know it could affect things - I will be prepared next time.
I signed up to an online nutritionist plan when I realised my vastly increased weight now puts me in the clinically vulnerable category for covid. Coincidentally they recommend low carbs, which I think has unintentionally lowered my gluten intake. I’ve noticed digestive improvements & lost some weight (slowly) but for the first time in a long time (despite other efforts). Now having read about going gluten free I’ve now ordered Isabella Wentz Hashimoto’s protocol book.
Fingers crossed this is the start of a recovery - didn’t realise how emotional this would suddenly make me feel ☹️
high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
On levothyroxine the most important results are Ft3, followed by Ft4
TSH frequently will be under one when adequately treated
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
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