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
Thank you for your reply SlowDragon. I have to admit I’m dragging my feet with gluten free but I do look for gluten free food. I think I do need to trial this. Maybe it would help with my fingers too. I need to research what I can eat. I do cook gluten free meals on the whole and check labels. It’s the bread that’s the main issue I suppose!
I am following your guidance with blood tests and codes. I have a Wednesday 8.20am slot for blood test. I booked it a few weeks ago and couldn’t get Monday or Tuesday early am. Hopefully that will be ok.
I will use the thyroid checker when my results come back. My doctor, although willing to refer me to an endocrinologist of my choice ( still to choose) didn’t want to even do an Ft4 test as a specialist needs to monitor. She agreed to increase Levo to 75mg per day but no testing 6-8 weeks later. I saw a junior doctor a couple of weeks ago who put the recommended wording by Thyroid Uk on the blood test request “Please test for T4 and T 3 even if TSH is normal. “ we’ll see what the lab comes back with. I will still go ahead with the private test as I’m not hopeful that the NHS result will be as requested. I use this appointment for my private blood draw as staff are always willing to do this.
I will come back to you if that’s ok to discuss the results. Thank you for your help as always. I don’t know what I’d do without this forum!
BEFORE any consultation get FULL thyroid and vitamin testing done privately
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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
NHS referral frequently 12-18 months and may be refused if TSH “normal “ …….within range
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Good evening and thank you for all of your advice. I started on a gluten free diet after our last conversation and as you say it is relatively easy these days. I’m coping well. I’m embarrassed to say this but I no longer have to worry about going for a walk and coming back with a leak
I also have my blood test results so I’d really appreciate your thoughts about the results. I’m currently taking 75mg Levothyroxine per day (50 Accord, 25 pharma) I weigh 11 stone at the moment. I used the thyroid converter and think my T3 is low compared to T4. I wondered if I should ask the doctor to increase my levo , small steps still, maybe 100 one day, 75 the next. My doctor wouldn’t do even a T4 test as she wouldn’t know what dose to give me. She said we needed the endocrinologist to monitor. I haven’t made another appointment to see the private one I’ve been talking to on the phone. He sent me a blood test form without T 3 for this January on it even though last January he said he was considering a T 3 trial. I felt he wasn’t really understanding what was necessary. He never mentions the vitamins and ferritin. Six months later I asked him how my blood test was and he said he was happy with it. Only did TSH and is obsessed with cholesterol. How can an endocrinologist tell you they are considering a T 3 trial then doesn’t include T: on the next blood test form? I’m baffled and won’t waste anymore money with appointments with him. I’m so unhappy to be prescribed statins as I don’t think I should be on them with hypothyroidism. I take them intermittently reluctantly. I can’t find a doctor to understand my concerns. One even showed me the door.
I have a lump on the top joints of two fingers and one finger is still swollen I had X-rays on both hands I can see on my nhs website the results are normal. Tomorrow I shall call the surgery to see if the doctor intends to see me again
So my Medichecks blood test results are as follows:
Thank you once ago for your information. I’m sorry I didn’t even ask you how you are! I hope you’re well.
I stopped taking vitamins two weeks before I had the blood test so that’s probably why vitamin D level was lower. I think I only needed to stop the biotin ( in my boots extra strength B complex tablets). I also wanted a baseline. Next time I’ll keep taking them , just not the B complex. Sometimes I take B12 spray. Vitamin D is also a spray with K2. I take vitamin c with zinc, selenium and omega 3,59. Also I take magnesium sometimes before I go to bed. ( vitabiotics) All are Holland and Barrett or Boots. I know I need to check for gluten free now. I shall buy the B vitamins I’ve seen recommended on this chat with folate which is natural. I’ve just accidentally deleted it from my Amazon basket! I’ll search again.
Do you think Vencamil will make a difference ? I don’t have the experience of trying different Levothyroxine brands. I do totally understand as when I was taking tamoxifen, the pharmacy kept giving me different brands and the only one I could tolerate was Wrockhart so I asked to doctor to be specific on my prescription. This isn’t happening with my Levothyroxine as I always get the two same brands ( which in itself isn’t right but pharmacist said it’s ok to mix brands!!). I haven’t tried any other brands to know how they make me feel but I’d avoid Teva as Teva tamoxifen was awful.
I am near Wolverhampton, Shrewsbury, Telford. Birmingham City is where I’m on the nhs waiting list as the person I had to ring to decide where to go said there wasn’t endocrinology at Queen Elizabeth Birmingham. However since then I’ve discovered there is. If you can recommend an endocrinologist to me, I’d be very grateful.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
I am near Wolverhampton, Shrewsbury, Telford. Birmingham City is where I’m on the nhs waiting list as the person I had to ring to decide where to go said there wasn’t endocrinology at Queen Elizabeth Birmingham
Any named endocrinologists must be by private message only
McPammy may have suggestions on local to you options
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Blood test results - help please!!
Could anyone please help to interpret my test results please. 
Help with blood test results 
Blood test results - help needed please!
