This diagnosis has overwhelming effects on life. I have all the symptoms. Levothyroxine prescription changes with blood tests. None of it works
Really is this truly all that is available. If it’s an auto immune system attacking my Thyroid or so I was told by my latest GP phone call. Why not deal with the immune system. This weight gain will surely cause my death.
Hi there, I'm sorry you're really struggling. Yes, I think doctors down play autoimmune disorders. I certainly was told that all I had to do was take this pill and all would be well. I have had vertigo for the past 3 months, but as yet no diagnosis, but quite likely a result of being hypothyroid. Do you have any recent blood test results? What dosage of levothyroxine are you on? How are your vitamin levels?
Unfortunately a lot of AI diseases are all about management not cure. I have pernicious anemia, another AI disease which destroys my ability to absorb B12, so I have to have jabs to replace the missing vitamin.
Certain AI diseases use strong steroids or even chemo type drugs to suppress the immune system, but they come with their own risks and side effects. There are no easy answers. AI diseases typically affect women more than men and often if you have one you'll get another.
Its a combo of genes, environment, lifestyle and hormones that trigger them and yes it sucks bigly. With Hashimotos aka AI underactive the treatment is just to replace the thyroid hormone your body is no longer able to produce.
I have all the symptoms. Levothyroxine prescription changes with blood tests. None of it works
Now that sounds as if your doctor is dosing by the TSH. And that will never work. It just puts you on the TSH seesaw: TSH goes down, reduce dose, TSH goes up, increase dose, TSH goes down, reduce dose... and so ad infinitum. But they don't know any better. Does your doctor ever test your FT4 and FT3? FT3 is the most important number, TSH the least important. But they all have a mortel dread of a low TSH. And for no logical reason.
What's more, with Hashi's, levels are going to fluctuate anyway, but they don't know that. The problem is with doctors' lack of knowledge, not the treatment itself.
If it’s an auto immune system attacking my Thyroid why not deal with the immune system.
Because there is no way of dealing with the immune system. There are no treatments for autoimmune diseases. All you can do is replace the thyroid hormone that your thyroid can no-longer make enough of due to being damaged by your immune system.
And, even if there were a way to stop the Hashi's and the attacks, by the time you get onto thyroid hormone replacement, it's too late anyway. Your thyroid is damaged and cannot regenerate. The impaired function is for life. The only solution that medicine has to offer is thyroid hormone replacement.
That said, it would help if doctors knew more about the thyroid, what the various hormones are and what they do, and the correct way to replace them. But they don't because they just don't learn about it in med school. They are taught to dose by the TSH, but they haven't a clue what the TSH is, or what it does. Most doctors have never even heard of T3. So until education on thyroid improves in med school, all we the patients can do is learn about our disease and how to treat it, and try and guide our ignorant doctors. And sometimes that works, and sometimes it doesn't.
So, do you always get a print-out of your blood test results when you have a blood test? That's the first step. You need to know exactly what has been tested, and exactly what the result was, and learn to interpret the results. We can help you with that. 
Lots of people find going gluton free can help reduce symptoms, it is thought your bodys can confuse gluten with thyroid cells and if you gluten sensitive your body attacks your thyroid. No way to deal with damage already done other than replace thyroid hormones. It sounds as if you doctors is doing a poor job of treating you. Post you latest blood results here with a list of symptoms and people can advise furthur.
Looking at your profile info you are currently only taking 75mcg Levo daily
Unless extremely petite that’s likely too low a dose
Levo doesn’t “top up” failing thyroid, it replaces it
which brand of levothyroxine are you taking
The only brand that makes 75mcg tablets is Teva
Teva brand upsets many people
First step is to get FULL Thyroid and vitamin testing done
you already know that your hypothyroidism is autoimmune
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Low B12 causes dizziness
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
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
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 near full replacement dose
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
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).
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
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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
Post discussing gluten
healthunlocked.com/thyroidu...
Thyroid patients don't realize the negative effects that gluten and Lactose has on many of us. I'm one of the people before I was even aware that I was experiencing and connected to thyroid ailment. After ingesting gluten or lactose 20 minutes I would feel lethargic and needed to sleep. I was totally brain foggy. I so appreciate very much SD's continously driving home this Very Important Point. Thank You.
I have hashimoto's with high TPO. I have definitely been told there is nothing that can be done for an autoimmune disease. I have read a lot online and found a sort of middle ground I am working on. The theory is that lifestyle changes and diet cam remove some of the stressors and in time reduce the autoimmune response. From what I gather this is s very long process.
I figure I have no other options in this area so trying to adjust my diet to be less inflammatory is worth a try. I have had some improvements going dairy free (turned dairy intolerant and hadn't realized it was separate to hashimoto's) and that has reduced my pain levels. Just working on more (while waiting for the nhs to sort out my thyroid).
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