hi everyone I hope you don’t mind me asking for help again. I had a blood test request from my endocrinologist last January and was very disappointed he hadn’t requested T4 let alone T3. He’s only interested in TSH and my cholesterol. He also tells me to Jake my Levothyroxine just before a blood test which I don’t do following your good advice on this group. So I don’t think I’ll see him again.
My doctor out of the blue requested a six monthly blood test to monitor Levo 50mcg/ 75 mcg on alternate days. However she too did not request T4 ( unable to test T3 anyway) I requested B12, but D3, ferritin and folate. Here are the latest results:
TPO. >600 0-34
TSH. 1.21mu/L. 0.30 - 4.20
Sérum 25-HO vit D level 94.1nmol/L
Sérum vit B12. 414ng/L. (180-640)
Serum ferritin. 97ug/L 28-200
Serum folate 7.5ug/L. 3.0-20-0
The reason I’m asking if these levels are ok is because I have an appointment tomorrow with a doctor I’ve never seen at my surgery who apparently listens to you and tries to help. Fingers crossed.
i know I need a T4 and T 3 blood test to see what’s happening with my Hashimoto’s. I’m struggling with emotions and low mood but also have had a very stressful year with upsetting events. Please can you help me to ask the right questions to get help?
my voice has started to by a bit croacky and I have sort of gurgle sound coming from my throat again. I already have a 2cm goutte and I’m scared my thyroid is being destroyed and I have no one to help me manage it.
thank you for your help once again.
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Boohooby
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obviously it’s absolutely essential to test Ft4 and Ft3
Like thousands of U.K. patients, you are likely to need to test privately to make progress
You are on a very low dose levothyroxine
Request increase to 75mcg daily
Approximately 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)
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).
Which brand of levothyroxine are you currently taking
Thank you so much SlowDragon for your detailed response. I currently weigh 71.67. My weight has started to increase and I’m trying to lose weight again. It helped when I was first put on Levothyroxine.
The brands I take are 50mcg Almus ( accord) and 25mcg MercurPharma. My endocrinologist said two different brands don’t matter as did my chemist but following from experience with tamoxifen there was only one brand which suited me ( and the GP had to specify this in my prescription. Wrockhart)Incidentally, could tamoxifen have influenced my Hashimoto’s?
I stopped taking supplements for my recent blood test to get a baseline. Normally I take a high strength B12 oral spray (Boots) and D3 +K2 1000 is one spray. Sometimes I take a high strength B vitamin complex, ( not sure if I should take that with the B12), vitamin c + zinc, selenium, magnesium , salmon oil as I won’t eat fish,
I’m not sure if iron tablets help. Is that ferritin? Sometimes I take Holland and Barrett multi bits and minerals ultra woman but it contains iodine and I’m not sure that’s good for Hashimoto’s.
I have had a coeliac blood test and it was negative. I’ve been dragging my feet about starting a gluten free diet but I think maybe it’s time to try it. Stopping sugary food has got rid of my indigestion. I drink warm lemon water each morning to avoid caffeine and to increase acidity.
My last blood test to include T4 and T3 was 9th August 23 by endocrinologist.
TSH. 0.7. (0.27-4.2mU/L)
T4. 16.7. 12-22)
T3. 4.2. (3.1-6.8)
I don’t really know how to interpret these or work out percentages myself. Based on these results do you think I should increase to 75mg per day? I suppose I need to retest privately to see where T4 and T3 are at the moment as this was over twelve months ago. I’m sure the GP won’t do T3.
I’m sorry to keep bothering you! I’ve spent this evening on thyroid uk printing things for tomorrow, tick lists to show symptoms and my own notes to read out as I suddenly lose my thread when I’m talking to the doctor. I’m sure it’s the brain fog!
Thank you SlowDragon once again for more information. I do follow your advice when taking a blood test in spite of the Endo telling me to take Levo before the test. This is another reason why I won’t be seeing him again. I don’t feel safe with his judgement.
Hopefully this new doctor will be approachable and be open to what I’m asking of her. I will get a private T3 blood test as I’m sure the system won’t allow her to request one. Although the last results are too old, I can discuss the percentages and ask for a new test and hopefully more frequent testing/ monitoring I believe I should also be on one brand definitely not Teva I couldn’t tolerate Teva tamoxifen my mood went straight down . Maybe a steady increase to 75mg per day and the one beginning with V ( sorry I can’t remember without looking again to note it)
Thank you too for the thyroid calculator. That will be very useful.
I have also looked at the various links on the blood test pages 1 and 2 you sent relating to B12 deficiency, best forms of D3 etc. I have some serious work ahead of me to sort vitamins etc.
Thank you so much for giving me hope that there are people out there that understand and have solutions. It’s a lonely place with this disease and it’s hard to get people to believe you.
Your antibodies are high 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.
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
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