Following on from my blood test on 14 Jan which is attached and done by medichecks I had another blood test on 22 Feb through my GP as my GP wouldn’t increase my levothyroxine in Jan - I am on 75mg and have been since 2016 on 22 feb my results are My serum T4 is now 10.5pm/L my serum TSH is 5.30mu/L - last time it was 64.3
My se thyroid peroxidase ab conc is 429 Kiu/L last time in jan it was 311.
They were supposed to be doing a liver and vit d test but they forgot to test so I have to go back but they did a urea and electolytes test and a bone profile test and although my results are in range some of them have gone up rapidly and I can see are rising like my serum urea which is 7.10mmol/L in range 2.5-7.8 and last time was 4.50 and serum creatine which is 83um/L in range 50-100 last time it was 72 and time before 63. My serum alkaline phosphatase is 115iu/L in range 30-130 and last time was 90 and time before 68. Although some of these are in normal ranges I am concerned they are rising. I keep having to have private tests as GP keeps saying I only need blood test every 2 years for thyroid - my appt with GP is next week and they are going to do another liver and vit d test as well. Does anyone have any advice on what I can say to doctor. I attach my jan results for reference. I feel so tired, my skin is so dry and itchy, I can’t sleep, my fingers ache and are puffy, my weight has gone up by over 3stone in 2 years and that’s just some of my symptoms.
I do take vitamins to try and help like vit d, selenium and magnesium, b12
Has anyone got any advice as to what I should be saying to doc
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The aim of Levothyroxine is to increase slowly in 25mcg steps until TSH is around one and FT4 towards top of range
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests? If so then TSH is too high and FT4 too low
You are ready for next dose increase and bloods retested in 6-8 weeks
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Essential to test vitamin D, folate, ferritin and B12
Have these been tested
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.
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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
But don't be surprised that GP (or endo) never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
If GP is unhelpful then you will need to request referral to endocrinologist of your choice
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
Thank you yes my test was done first thing before taking meds. I had vitamin tests done in Jan and they were supposed to test again in feb but they forgot so I’m having them done next week. I might get the coeliac test. My hashimotos antibodies are getting worse.
It really doesn't matter that your antibodies are getting worse. They fluctuate all the time, but it doesn't mean anything. Once you have had an over-range results, you have Hashi's and that doesn't go away. There's really no point in keep testing them.
Thanks for giving me the info on ideal level for TSH - I gave GP appt tues and will ask her to increase my levothyroxine. What is the ideal level for Ft4 on levothyroxine and what is the ideal level for t3
Slow dragon & greygoose have given you very good advice.
Your GP is keeping you ill by not increasing your Levothyroxine. You desperately need an increase as a TSH of 5.30 is still under medicated.
75mcg of Levothyroxine is a low dosage and no wonder you feel so ill.
SlowDragon has explained the procedure on Levo.
I notice on your medi checks results your T3 is very low, T3 is very important it controls your metabolism and emotional well-being, GP’s reckon it’s not, also your T4 is far too low as well.
I see your GP isn’t testing your T3 either.
My advice is to be firm with him and request a further increase of your Levothyroxine by a 25mcg.
Keep increasing your Levothyroxine until your TSH reaches 1 or below, and your T4 & T3 is in the higher figures of the ranges.
If he refuses them I would consider self medicating on NDT, or seeing an Endocrinologist, Thyroid U.K. have a list of friendly ones.
NDT contains both T4 & T3. Many members on here self medicate, including myself.
You would then be in control of your own health and get your life back. It takes time to recover and it’s not a quick fix. I’ve had many hurdles along the way, and I have been ill for a long time without realising.
The longer you leave it being under medicated the longer the recovery.
You need to go gluten free, to see if you can reduce your antibodies as you have Hashimoto’s.
I have Hashimoto’s, underactive Thyroid and I’ve been gluten free since 2017.
Until your sort out your thyroid problems your liver and kidney test will show out of range, it’s all connected, this happened to me.
Many only have a thyroid check every year via the NHS, but, that’s after they are finally on the correct dosage. Your not. What then happens is your TSH gets suppressed and your GP gets scared about heart issues etc, he then reduces Levothyroxine and then you start what I call the rollercoaster of Levothyroxine. It’s all a load of rubbish.
You could say that you have been researching and a member of thyroid U.K. charity and you are definitely not on the correct dosage. It depends how sympathetic your GP is and how educated he is on this, only you know how to play the situation.
I went in armed with loads of information and I think I just bamboozled my GP that he send me away with an increase every time. I also said things like “oh I remember you said you look at the bigger picture and it’s how you feel” etc.
Thank you so much for your advice when I went in Jan I went armed with lots of information but my GP just dismissed it. She said my low vitamin levels in the medichecks test were down to it being winter until I explained I was taking vitamin d supplement. She then said she would test my vit d levels again hence the test I have just had on the 22nd but they forgot to test for vit d. Even when my tsh was 64 in jan she refused to increase my levothyroxine. They also changed my brand last year to Teva that made me so ill so I stopped taking it for about a month - I’m now on wockhardt and Activis and I don’t feel sick with those.
I will try gluten free as I am finding now I have Diarrhea every morning now too. I just desperately want some energy and to lose some weight and not feel cold all the time.
Your GP is focusing too much on your vitamin D and not sorting out your thyroid issue.
For a TSH 64 and not increasing your Levothyroxine every 6-8 weeks is shocking and shows how little she knows.
Your TSH has reduced I think you said 6 something, well that’s still not adequate it needs to be 1 or below.
I wouldn’t bother seeing her again, is there another GP you can see?
I saw two GP’s in my practice, they both said it was all my head and anxiety. I walked out on one of the appointments as she also said I had been misinformed about Hashimoto’s.
Anyway, I saw another GP in my practice and he had far more experience and started me on 50mcg of Levothyroxine with increases every 6 weeks. It’s only because I got advice from here that I made sure I booked bloods every 6 weeks, and requested an increase, otherwise I don’t think I would of had the increases.
I pushed hard for an increase and wouldn’t take no for an answer, I kept saying it’s how the patient feels that’s important blah blah blah. My focus was on getting better and this gave me the drive to point out to my GP that I was being supported by Thyroid organisation and why was it so wrong to want to get better, he couldn’t really refuse me.
I can sympathise with about feeling the cold, it felt like ice cold water running through my veins, weight gain is because your T3 is so low, hopefully once you start upping your Levothyroxine the T4 will then convert to T3. This doesn’t always happen, especially if we have autoimmune disease, but for some it does.
Many including myself couldn’t get on with Teva at all, in fact I couldn’t get on with Levothyroxine. I got up to 125mcg of Levothyroxine, my bloods looked good, but I felt awful still.
I ditched Levothyroxine and started to self medicate. It’s the best thing I ever did.
Vitamins do play an important role in supporting the thyroid, but, as said your GP is crazy to be focusing on that alone.
Do you take vitamin C? I take about 1500mcg daily, as well as B12, vitamin D spray, magnesium, cod liver oil to name a few.
Maybe try some selenium daily for Thyroid support.
If it was me I would see another GP and get some more Levothyroxine (another 25mcg), if not see an Endocrinologist from the list provided here as per SlowDragon advice or self medicate.
You can buy Levothyroxine privately or NDT. NDT would be better as it has T3 & T4.
Don’t ever feel bad or guilty going behind your GP’s back. You have a right to be well, and you have tried with your GP.
They can’t tell you what to do. It’s your life.
Research as much as possible, even if it means reading it over and over again. Make notes, post it notes and I became the best of friends during my brain fog days.
Thank you so much for your help. I will try vitamin c - I currently take selenium, vit d, vit b12 and magnesium and I read somewhere vitamin k and b6 may help too. I’ve also read about people taking l tyrosene for more energy but some people on thyroid uk said it won’t make a difference. I think I’m at that stage where I will try anything that might help. My doc appointment is Tuesday so I am pinning hopes on 25mg increase.
I personally never visit the doctor they only made me ill for the first time in my life when I was on Levo, I was gaining weight too. I then joined this site and followed the good advice on here. I now self medicate with NDT have the same blood test as yours once or twice a year and feel well also not overweight. I agree with Peanuts31 you should sort out your thyroid first.
As you have clear gut issues see GP and politely insist on coeliac blood test FIRST before going strictly gluten free. Remain on high gluten diet until test
If coeliac blood test comes back positive you have to remain on gluten rich diet until endoscopy to check stomach
If test is negative you can immediately go strictly gluten free
Print off pages 12 & 13 of the guidelines and insist on 25mcg dose increase in Levothyroxine
Point out that guidelines say all four vitamins need testing
Thank you the reason my tsh was 64 was I was prescribed Teva last year and it made me so ill so I stopped taking it for a month had the blood test and doc appointment who then prescribed wockhardt and activis instead of Teva but she wouldn’t increase from 75mg until I had another blood test which was on 22 Feb but I am going back to see them on Tuesday to get an increase.
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