Hello, I am female and I was diagnosed hypothyroid when I was 25. I have been on Levothyroxine since then. I am currently 33. My dose is 50mcg because I can not tolerate any brand of Levothyroxine. My GP has recommended T3 to help with the gut absorption issues but he then said he is not authorised to prescribe me any so I have come here. I have constipation, swollen ankles which has only just come on, sudden weight gain, have suddenly gone from 56.1kg to 56.9kg within a day, loss of appetite, tiredness, pale skin, bruising on legs, flaky nails, aches and pains. My thyroid gland has grown in size but goes down on its own. The last time this happened was 4 years ago. Ultrasound scan in 2015 showed thyroid gland enlarged but if thyroid gland did not make my neck swell up back then I really don't know what to think or if I should see a different endo. Endo says he does not understand my results going up and down. Am I right to worry about his way of thinking if he doesn't know what is happening to my levels. Thankyou
Thyroid function test - GP comments - satisfactory
You have autoimmune thyroid disease aka Hashimoto's, confirmed by raised antibodies. Hashi's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
Your endo simply doesn't understand this. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
My GP has recommended T3 to help with the gut absorption issues but he then said he is not authorised to prescribe me any so I have come here.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. So before considering T3 you need to address the gut issues so that nutrients can be absorbed, vitamin and mineral levels optimised and then thyroid hormone should work properly. You need to ask for the following to be tested
Vit D
B12
Folate
Ferritin
And if Ferritin is low you will need a full blood count and an iron panel.
Check out the reply by SlowDragon towards the end of this thread, there is information plus links to help with gut/absorption problems
Also, TSH over range, you are undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. You need an increase in dose of Levo of 25mcg, retest in 6-8 weeks, further increase of 25mcg, retest 6-8 weeks later, etc, until your levels are where they need to be for you to feel well.
I presume you have been told you have Hashimoto's disease ( diagnosed by two high thyroid autoimmune antibodies)? This is the very likely reason your blood results go 'up and down', and is common in hypothyroid sufferers. The antibodies mistakenly believe the thyroid gland is 'alien' and attack it, in what are referred to as flares. So dead cells, along with their thyroid hormones, are discarded into the blood stream, consequently your blood tests would have 'highs'. The more your thyroid is attacked the less able this gland is able to perform efficiently and your hypothyroidism becomes consistently worse and permanent. Many try to limit these Thyroid attacks by going gluten free, or even dairy free. Your 50 mcg of levothyroxin is not sufficient replacement hormone to reduce the hypothyroid symptoms - your TSH ideally should be 1 or lower ( its suppression is also said to limit flares). You have been lucky that you have found a doctor willing to treat with levothyroxin with a TSH under 10! While your TF4 is ok, your FT3 is low - nearer 5 being halfway thru the range. You look like a poor converter of T4to T3, so your doctors idea of T3 would be a good idea. Hashimoto's is characterised by poor gut absorption and low nutrient levels- has he tested VitD, B12, folate and ferritin levels? These need to optimum at upper ranges ( see SeasideSusie's regular replies re vits/ mins), so your doctor ( or you) might need to supplement these to encourage good thyroid health and conversion. You will have realised that many members don't get many of these tests on the NHS and resort to private labs like Medichecks or Blue Horizon - so a way to go if your doc is reluctant. I get my T3 from abroad without prescription.
Please take a look at this post from Lyn Mynott (CEO of Thyroid UK) in case you can help by submitting your story of being denied a prescription for T3 even though your GP says you could need it healthunlocked.com/thyroidu...
Yet another endocrinologist surprised at most common cause of being hypothyroid.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's. Levels go up and down due to fluctuations in antibodies levels
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
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.
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
Yes T3 is likely to help, but you must get vitamins optimal first and trying strictly gluten free diet too
Then if FT3 remains low after these steps look at adding small dose of T3
But first read up as much as possible about Hashimoto's.
Your TSH is high, yet FT4 also high, this is likely due to low vitamins. Your GP sounds helpful ask for vitamin D, folate, ferritin and B12 to be tested
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, (and if on T3 don't take in 12 hours prior to test,) delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Can you add vitamin results and ranges from April and say exactly what you are supplementing
Vitamin levels need to be optimal
Vitamin D around 100nmol
B12 and folate towards top of range
Ferritin at least half way in range
Most of us need significant levels of supplements, especially if under medicated (as you are) and also not gluten free yet
Selenium supplements can help improve conversion of FT4 to FT3
Vitamin C for adrenals
Your only on starter dose Levothyroxine. Dose needs increasing in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
NHS guidelines saying standard starter dose is 50mcgs and that majority of patients need dose increased in 25mcg steps until dose of Levothyroxine is somewhere between 100mcg and 200mcg
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