Latest test results just came in, I need to make another appointment with the private endo, I had a consultation with her in January and although she was In agreement that I indeed wasn’t off my trolley as the gp’s and nhs endo seem to think.. she did say she was struggling to make a case to get the gp to prescribe me meds again. And to do another test and come back to her with results.
I’m not sure where to go from here as my both my antibodies seem have come down again but the last test I had a few years ago I had no tg but tpo was high. I’m taking black seed oil which I’m not sure if that helping I’ve been taking it for about a year, My hair is growing well but still falls out, so I have a lovely mullet style lol I have gum issues, anxiety at my period, skin is mess and struggle to loose weight even though I work out most days and only eat 1300 calories a day. Any advice would be much appreciated. Tia Sarah
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Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking
Both sets of results suggest you are under medicated
New ones are on the right, I was taken off levo in January id only had it since Oct 25mg as a locum gp with hashimotos was at the practice but the other gps won’t give me it. Test was done as soon as I got up after shower, last tests for vits were done in Oct all were optimal I’ve been taking vit b12, D for a few years also take vit c, zma and black seed oil, I have folate and iron from gp. I haven’t tried gluten free as I’m quite a fussy eater but trying to eat a lower carb diet and get more veg in where I can. Haven’t had coeliac test x
Results on left were taken after being on 25mcg levothyroxine?
Ft4 only 33% through range
Ft3 only 48% through range
They show under medicated
Aim is to increase the dose slowly upwards in 25mcg steps until Ft4 is in top 1/3rd of range and Ft3 at least 60% through range
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, 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
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.
Yes from Oct-Jan I tried to get my dose put up in December but the gp said I would need tested again but if it wasn’t over 5 they wouldn’t treat me or give me anymore 😩 I think I’m about 10st/10 and half I don’t actually weigh myself as I had an eating disorder when I was young. Any advice on how the private endo to make a case to gp to give me levo please? X
It was bulimia when I was 21-22 so not too long I’m 40 next week. I’m sure my grandad dying 9 years ago and a long term relationship broke up 2 months after is what kicked it all off my mum actually got diagnosed with graves the year after aswell. I’ll make an appointment with her this week and hopefully will be able to get me sorted, it was only a small dose but I did see an improvement in my anxiety before period and hair wasn’t falling out as much my skin got better aswell so fingers crossed that’s enough 🤞🏼 I was also wondering if it was worth trying low dose naltrexone first? X
There are probably a lot of causes of hair loss but a common one is low iron and/or ferritin (iron stores). If you haven't had your basic nutrients tested recently it would be a good idea to get them done. You could then post the results and reference ranges here and ask for feedback.
Optimising nutrients can improve output of thyroid hormones in someone who still has a thyroid. See this link for what happened to my results with better nutrient levels :
If you are confident that your nutrients are optimal then it looks as if your hair loss and other symptoms are caused by (undiagnosed/undermedicated) hypothyroidism.
Your results on the left on 25mcg levo were bad enough but obviously fell further when the levo was withdrawn. Your medics appear to lack knowledge of thyroid disease!
You say you work out every day and consume 1300 calories daily. I might suggest that you are asking too much of your body right now because - due to hypothyroidism - it doesn't have the "battery power" needed to sustain your energy output! Try slowing down a little until you feel better.
I suggest you need to be medicated with levothyroxine, starting dose 50mcg, test after 6 weeks then adjust dose again as required until TSH is close to 1 and FT4 and FT3 are approaching 75% through reference range ( this will vary up or down slightly depending on the individual patient's body needs)....and most importantly, until you feel well!
Unfortunately medics are taught that TSH is the gold standard test which is incorrect on several levels....they will not medicate until that number is much higher which leaves the patient feeling unwell as you appear to be experiencing.
In your shoes I'd be looking for a more knowledgeable medic or, failing that, pushing for a trial of 50mcg levothyrixine.....asking for a TRIAL may not bruise their egos as much as demanding to be medicated!! (I'm not suggesting you did that!) It might buy you time to prove that you need to be medicated! They shouldn't need more results, those low Frees should be enough!
You might also print off this list of symptoms and carefully tick off every one that relates to you then give that to your GP when you visit and ask them to read and comment on your symptoms.
I spent about 40 years being given the run around by medics.....all the time it was a complex thyroid problem which I only understood when I arrived here. Utter madness!
It's your body, you know when it doesn't feel right, don't be fobbed off by incompetent medics who tell you that you are " normal" when your experience is otherwise ..... as I was.
Yes they do they only go by the TSH before I started looking into everything I was exhausted all the time, mood was quite low but the vit D and B12, folate and iron have helped massively, I take vit c which stopped cold sores. The nhs Endo said I wasn’t sick enough and bad told me to get on with it, she treats my mum aswell ( I believe she is under medicated too) I have issues with my back so I only do low impact but try to get atleast 30 mins in the fat burn zone, I think just with having issues with my weight and bulimia nearly 20 years ago I do everything not to gain anymore but find it almost impossible to loose, I can feel when my tsh goes up because I get kinda squidgy if that makes sense? I think getting my iron sorted is what’s made my hair grow but because my thyroid isn’t right it still falls out.
Thank you that’s a great way to put it to them hopefully the private endo will be able to make the case for me now x
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 with Hashimoto’s 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 endo/GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
I haven’t had the test but I definitely couldn’t go gluten free I’m a really fussy eater unfortunately 🙁 I have been tested and have results saying I have strep and staph infections and a yeast overgrowth which I can’t get treatment for but hoping the private endo will give me a prescription x
I know I just need to get medication it’s just proving difficult unfortunately, fingers crossed the private endo will help I don’t even care if I have to pay for it id just like to feel like a normal 40 yearold lol x
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