Hi, I have ongoing symptoms and private tests in July this year showed high antibodies Hashimotos. I’ve just had my latest GP results, no T4 tested even though I was promised this. Totally lost all faith in my GP now!
My questions are 1) for optimal health would you recommend getting tested privately? 2) If so how often? 3) does the cortisol result look optimal?
Cortisol 412 nmol/L
Cortisol greater than or equal to 350 nmol/L makes adrenal insufficiency unlikely.
TSH 2.8 mIU/L 0.27 - 4.2 on 100mcg of levothyroxine
Bloods took after fasting and no levothyroxine for 24 hours
July 2020 private test full thyroid and vitamins TSH 0.02 on 125mcg of levothyroxine
October 2020 TSH 12 on 75mcg of levothyroxine
Ranges as above
Written by
Molly139
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Looking at previous posts it’s only a month since dose was increased back to 100mcg
Suggest you order test ready to retest at 6-8 weeks
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS, including vitamin B complex
Do you always get same brand of levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hi SlowDragon, it was more than 6 weeks since my last test 1st October. I do all my tests that way apart from the October one which was sprung on me. Back to my questions is it worth having another private test now my last one was in July 2020? Also, can you comment on my cortisol results please?
I also had the same issues with my gp . I was diagnosed with hosimotos disease at 31 and was put on synthroid. I have never felt the same . I kept telling my gp I don’t feel right and she kept ignoring . After going through a battle for a year of Gastro issues, my beautiful thick full hair was dry thining and falling out ,joint pain , my hands where numb and hurt fingers especially rashes that come out of no where , constantly cold , my joints were killing me and to boot I was a happy go lucky son of a bitch and this shit caused the worse depression and brain fog you could imagine. I finally lost my cool after a year with my gp and literally tore into her I walked out dr office left and never went back . Just to give you a lil backround ! Your not alone ! They think we are being hypochondriacs when in reality we are telling them wtf is wrong lol . I found a wonderful endocrinologist who really listened and took me seriously . She really ran every test under the so. And figured out my levels were not even in range but to my gp it was broader so she wouldn’t raise my dose Iam now up to 90 mcg of synthroid from the 50 my gp had me on ! Speaks volumes there . She also tested me for allergy’s my cortisol all female hormones and vitamin levels . I suggest to any one running into a dr who thinks they know your body better then we do I suggest going to an endocrinologist I feel like they just are better equipped to handle this . My regular gp sent me to a hematologist also to see if I had lymphoma because of the rash I was getting . I tested negative no one could tell me what this rash was .... any way the encro ran a bunch of test and found out I only get it when I am ovulating it’s an allergy to progesterone the only thing I could coralate the rash to was I only got it when I was ovulating so moral of the story go to an encro ! I hope this story helps some one else who cant under stand what’s going on with there body good luck. Also I get tested every four weeks for my thyroid I don’t know about this 4 6 month business ! Hosimotos medication constantly has to be adjusted to a higher dose due to the anitbodys eating our thryroid . Problem is they don’t give anything to prevent the antibodies from attacking the thyroid just a hormone pill ridiculous . It’s an autoimmune disease not regular underactive thyroid .
Thank you so much for your stories So over it and Jonathan, they’ve given me encouragement and confidence to take control of my health. I’m also fed up of being labelled and treat like a hypochondriac, all I want is to live life normally. I’ve been gluten and dairy free for 3 months and have raised my low vitamin D from 43 to 78 by supplementing and taking co factors. Fingers crossed 🤞 I do feel an improvement not sure if this is a result of going gf and df or that I was overmedicated or a combination. Jonathan thanks for the turmeric advice I’ll look into that. I do add turmeric to my food.
One last comment: my GP referred me to an endocrinologist and when I asked her about my high antibodies and Hashimotos, her question was ‘do you have a goiter/swelling’ when I said I didn’t she discarded it!!
One of the problems with everyone on forums using the term "Hashimoto's" for all Autoimmune Hypothyroidism is that in this instance your GP was technically correct. If we use "hashimoto's" incorrectly it just gives them justification in writing off the rest of what we are saying as ill informed 'dr google' nonsense.Dr Hashimoto discovered the kind of autoimmune hypothyroidism that has a goitre, there is (at least ) one other form of autoimmune hypothyroidism that does not develop a goitre, discovered by a Mr Ord, called Ord's Throiditis, but it's not mentioned often ,even though there must be loads of us.
I did a post a while ago with some background on them both here
Thank you for the info tattybogle, I had never heard of Hashimotos before I posted my private blood results on here in July. I was then told on here ‘did you know you have Hashimotos’ 🤷♀️ Panic
i'm afraid it's one of my personal bugbears . One of the things that made me lose interest in looking for reliable information online 17 yrs ago was hordes of Americans writing with great insistence about "my hashi's" when they patently didn't have it. And i knew i didn't because i never had a goitre, but there was no question that i did have an autoimmune thyroid problem.I know it's not their fault i gave up looking ,and maybe there just wasn't as good a forum as this one back then , but we need to be accurate if we are to be taken seriously by Doctors AND by other patient's who are seeking reliable information.
Hope you understand i'm not criticising you at all for using it. Just using what was said to you by the doctor as an opportunity to clarify the difference and get something off my chest that's been bugging me for ages.
I agree, the facts and diagnosis should be accurate otherwise, the comment made to me ‘did you know you had Hashimotos’ based on high antibodies affected me so much, I was shocked and spent hours reading books and looking for something to ease the symptoms.
So I have a question on this, as I have no swelling do you know what caused both my antibodies to be high?
In the absence of any great scientific or diagnostic interest in examining folk like us with antibodies and hypo and no obvious swelling for GP's to get excited about ... i can only guess that you and me might probably have Ord's , but i've never been able to find out much more about it. And as far as i can tell no one in medicine is looking at us with any interest. So we're in the dark, and most of us will have no idea of what size or state our thyroid is in unless we paid for a scan or something ourselves. I can't find my thyroid by feeling, never have been able to , it's never sore, very uninteresting, ..... it doesn't work properly anymore though, and i had TPOab of >3000 once upon a time , and still around 195 15 years later.
Excuse the lazy wikipedia reference , but like i say , there's not much about it anywhere en.wikipedia.org/wiki/Ord%2...
I’ve been diagnosed with Hashimoto’s by a private professor but have never had a goitre. He was very, very thorough with my examination. I’m confused that he feels it’s Hashimoto’s but you’re saying I can’t be if I didn’t have a goitre.
It would be interesting to ask if him he's ever heard of Ord's , and how he would differentiate between the two. But probably his 'diagnosis' it's just a result of the same lazyness with terminology.You could say it doesn't really make any difference what we call it .... an autoimmune hypothyroid thyroid problem , is still an autoimmune thyroid problem, whether or not we developed a goitre, and the treatment is the same (crap )
My point was only to reinforce that inaccurate terminology allows the GP's who have read the page (sentence ?) in the textbook about hashimoto's thyroiditis, to conclude that we don't know what we're talking about.
I've just found something that i saved ages ago and forgot about . I can't vouch for the accuracy of the source, and in this instance Ord's is categorised as a variant of Hashimoto's.( Ord described his type first.)hashimoto.help/types_hashim...
But...i kept it because of the comment about the differing levels of various thyroid antibodies in goitrous and atrophic thyroiditis. ie higher 'Blocking' type TRab's in Ord's... not that we'd get to find if this applies to us out cos they're not measured much unless you had graves, and even then i think they just measure the 'stimulating' ones.
note; this is TRab ie. graves antibodies , not TPOab or TGab that we get measured to confirm autoimmune hypo
I was sent for a ultra sound on mine also and I do not have a swollen thyroid at all . They tell you put ur head back and swallow to see if it pertrudes out . I do not have a goiter at all . So you can have hosimotos with out that . The only reason I found out was because I was so so tired and gastro issues . That’s how I found out I had it . Also we just found out my mother has it also and three of her sisters and two of my cousins . They would have never known if I didn’t find this out . I don’t know if this helps but also people who have autoimmune under active thyroid most likely have a 2nd auto immune disorder . My mother also has MS and her sister have lupis. So just look out for that also . I am starting to feel better also on my new dose not the same but better . I k ow it’s frustrating I went to so many dr in a year but I didn’t give up and I landed in the right hands! Keep going till u get answers !
Hi, tiredness is up there with my symptoms and I also have psoriasis which is classed as an autoimmune disease. I’m going to get another private test done in January.
Thank you for all this information and encouragement I’ll be getting my case ready for the next endo appointment, hopefully the NHS don’t discharge me based on my last results!
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, but we need to be accurate if we are to be taken seriously by Doctors AND by other patient's who are seeking reliable information.
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