started being unwell Dec 2022 with musculoskeletal problems in left arm neck shoulder wrist finger by August 2022 became very unwell and continue to get worse which I now realise is Hashimoto's. I every symptom and more can’t stay awake feel like I am dying . Have had recent test showing my results below can anyone enlighten me as how this should be treated and who can help. Normal ferritin bits b 12 my tsh fluctuates on all test different result every time think gp and endo think I am hypochondriac am so desperately lost and don’t even know how to speak to them anymore they don’t listen . Test after test after test need help to understand how I can be so unwell with every symptom of hypothyroidism and levels of tsh t3 t4 within range does anyone know how to get help 😦
going through a nightmare feel like I exist not... - Thyroid UK
going through a nightmare feel like I exist not live Omg anybody help !!!!!!!
welcome to the forum
Yes your high thyroid antibodies confirms that you have autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
ALWAYS test thyroid early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
At moment TSH is not high enough to easily get diagnosed ….a GP will want two tests with TSH over 5 before diagnosis
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
First step
Get vitamin levels OPTIMAL as low vitamin levels tend to worsen symptoms and lower TSH and TSH is frequently (and incorrectly) all most medics look at
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
please add actual results and ranges for
Vitamin D, folate, B12 and ferritin
Also request GP test for coeliac disease…..or test yourself
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
thank you so much for your reply and help . it as my endocrinologist as not diagnosed was totally ignored everything I said she sent letter to GP saying she doesn't know reason why I am so unwell even though i told her my symptoms and also said in letter if she doesn't know if she could help with wide range of symptoms she ran my tpo and could see result yet in letter she says though tpo high we will just keep an eye to see if i develop hypo. she could see all previous test result of fluctuations over period of 12 months yet ignored how unwell i was .I have had scan last oct which showed slightly enlarged thyroid and all lymphatic glands raised. I have had mri on pituitary ordered by gp due to pressure and migraines consistently ) which is normal, as I had prolactin tuma on pituitary gland in 2016. it came back no abnormalities.
I went glutton free few months ago which as stopped my gut probs but I remain very unwell no QOL at all. my health deterring quickly with numerous musculoskeletal problems progressing as well , my eyes are blurred and swollen too, my tongue now scalloped throat tender and swallowing probs hair snapped falling out rely everything you could possibly have could go on forever, am so depressed feel like my life is over .
so all your advice is valuable to me thank you so so much
What are folate, B12 and vitamin D results
I had prolactin tuma on pituitary gland in 2016.
Suggest you consider seeing thyroid and pituitary specialist endocrinologist.
Roughly where in U.K. are you
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
thyroiduk.org/contact-us/ge...
Vast majority of endocrinologists are diabetic specialists and useless for thyroid
p.s am in st helens merseyside 😘
hi slow dragon have you any idea what i should say to the endocrinologist when I have my appointment....? she is not easy person to talk and I think she makes her own mind up no matter what I say .
what i should say to the endocrinologist when I have my appointment.
Take a printed copy of hypothyroid symptoms
Tick off all that apply
Point out
A) you have high thyroid antibodies = Autoimmune thyroid disease
B) gluten free diet has been significantly effective in improving gut issues
C) You had Pituitary Tumour in 2016 - TSH is particularly questionable
D) Ft4 is low and dropping at each subsequent test
E) been too unwell to work since last August
F) request test adrenal hormones and sex hormones
G) You would like a trial on Levothyroxine
What are folate, B12 and vitamin D results
Exactly what vitamin supplements are you currently taking
Look at improving vitamin D at least around 100nmol
A daily magnesium supplement too in afternoon or bedtime
what is a daily magnitude supplement xx😂 do I need T 3 where can I point her too if she disagrees ! To give her knowledge about this xx thank you so much ☺️
Sorry…should say Magnesium (autocorrect gone wrong)
Tumour markers ca125 8.4,ca199 is 4, cea3.4, Ldh 323,
Don’t know what these mean either not very savvy but thank you for all your help I so appreciate it x💕
I found these from the 19th feb in letter from endo: Fsh80.7 Lh36.1 prolactin143 9am cortisol560 adjusted calcium2.63-2.76 tpo>1300 calcium2.66 hb144 wcc 9.1
My wbc as been raised mostly stays around 11.9 don’t know if these mean anything there’s also tumour markers on this letter too
Xx
TPO is thyroid antibodies - result is high confirming autoimmune thyroid disease, also called Hashimoto’s
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
cortisol looks slightly high, as you would expect when hypothyroid. Adrenal system tries to compensate for low thyroid hormone levels by increasing cortisol
Thank you so much 😊 I will get mg not sure which brand and what to look for . Am taking d3 400iu and selenium 200ug have been since last October .
Did you have all these problems?
Do I need both t3 and t4 coz I have heard they don’t prescribe t3 . Am so exhausted all time is this normal for this Hashimoto’s and do you have it and how long did it take for you to feel normal again . Sorry for all questions xx just trying to understand how it all fits together .
You can read my profile
Hashimoto’s, vitamin deficiencies, gluten intolerance, dairy intolerance etc etc
Am taking d3 400iu and selenium 200ug have been since last October .
400 iU Vitamin D3 is a very low dose although your result of 74.9 suggests you absorb it well. Optimal for vitamin D is 100 - 150 nmol/L.
You could raise your dose and see whether it improves how you feel. People on the forum take all sorts of different doses of vitamin D depending on their symptoms and how well they absorb it e.g. 1000 iU per day, 2000, 4000, 5000, 10000 iU. People who do take it generally take a dose somewhere between 1000 iU and 5000 iU per day. If you get your Vitamin D up to optimal you might still need to keep taking a supplement to maintain your level.
You can maintain your level in two ways. Either lower your dose and continue taking it every day, or continue taking a higher dose but take it fewer days a week. The second option is usually the cheaper one.
...
Your selenium dose of 200 micrograms per day is quite a high one. I think the maximum tolerable dose is 400 micrograms per day, so you are well within that. However, there have been a few members who don't tolerate any dose above 100mg per day. Symptoms of selenium toxicity (a condition called selenosis) are listed here :
en.wikipedia.org/wiki/Selen...
And for info on the best types of selenium supplement :
healthunlocked.com/thyroidu...
A couple of popular selenium supplements :
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.
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
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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
Post discussing gluten
Free T4 (fT4) 14 pmol/L (12 - 22) 20.0%
Free T3 (fT3) 4.3 pmol/L (3.1 - 6.8) 32.4%
Despite TSH not being high enough to get diagnosed easily Ft4 and Ft3 are already low
Like many of us with Hashimoto’s TSH is unreliable
Get vitamin levels optimal first
Trial GF/DF
Retest thyroid every 3 months
And look at seeing thyroid specialist
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
Being in range is not the answer!
Instead we need to find the exact point within the range where symptoms are relieved.
Your Frees are too low and with Hashi's are likely to fluctuate occasionally.
How much levothyroxine are you taking? It appears that you need an increase
Medics knowledge of thyroid disease is very poor, particularly when one does not respond to basic treatment
Your GP should be able to deal with your problem
TSH is not a reliable marker. FT3 followed by FT4 are the important numbers.
Your GP most likely focusses on TSH which is wrong
thyroidpatients.ca/2021/07/...
Both Frees need to be roughly approaching 75% through the ref range
Use this calculator to find your levels.....they are abysmally low!!
thyroid.dopiaza.org/?utm_so...
Correct replacement hormone / levothyroxine should help
Essential to optimise vit D, vit B12, folate and ferritin to support thyroid function
You are absolutely not a hypochondriac...you are unwell and wrongly treated and your GP needs to understand this!
hiya thanks for this inf , am not on no meds the endo I was referred to is hopless she seen all results in normal range on 19th feb ans reported my tpo high her reply was lets wait and see though I told how unwell I am and have been for months been off work since august last year guna loose my job if not dead before they dismiss me.🤕!!!!
I'm beginning to think, "wait and see" is a new diagnosis!!
I have Chronic UTI and was told the same thing recently! Madness!
Don't be afraid of speaking to this clown...I'm laughing at GG's great advice re socks and under-pants.
Go back and educate him....you now have the "tools" to do the job.⁷
I used to write a reminder list of all I wanted to say and ask before an appointment. It stopped me squawking like a demented parrot if I felt confused!!
Hang on in there, and if he doesn't come off his high horse complain to your Practice Manager
its not my gp its the actual endocrinologist consultant shes arrogant and does not listen lol . and yes BE PATIENT AND WAIT AND SEE IS DEFO NEW DIAGNOSIS LOL😆
Sorry, I missed that.
This is appalling and decisions are by being made by the wrong person....she is probably a diabetic consultant.
A GP usually deals initially with thyroid issues ...did you hit a brick wall with your GP too?
Did the GP refer you to an endo.
Your labs and symptoms are a textbook example of hypothyroidism.
I guess they are only looking at your TSH which when euthyroid should be 1, maybe 2. They often look for TSH to be 10 or over and completely overlook symptoms. These are a major factor in diagnosis and which the guide lines they seem so keen to adhere to points out.
I suggest you speak to your GP who should be dealing with this, and if necessary, request another endo appointment. Take someone with you, I took my husband who said little but acted as a witness!!
I gave up and decided to learn then self medicate.
It's a scandal of monumental proportiom
Hi forgot to say it was AE whom referred me to endo as been having random hypoglycaemia and blood sugar drops very low . I don’t have diabetes just happens am waiting for prolonged gtt test but I know it’s due to my condition and all the musculoskeletal problems I have shoulder ulcer nerve entrapment and carpal tunnel’s I now have mallet pinky finger too and neck disc protrusion ,this all happened so quickly when I became unwell with what I now know is Hashimoto xx
Hi Jemjet, welcome to the forum. 
my tsh fluctuates on all test different result every time
Do you always have your blood draw at the same time of day - i.e. before 9 am and fasting? Not only does TSH fluctuate with Hashi's, due to the nature of the disease, but it also varies throughout the day, being highest at midnight and lowest around midday. so we always recommend having blood taken before 9 am, as being the most practical time.
gp and endo think I am hypochondriac
Most of them tend to treat hypo patients like that, to cover their ignorance, because they really don't know a whole lot about it. Don't let them intimidate you. Just look them in the eye and say what you have to say coolly and calmly, in a determined voice. Imagine they're sitting there in just their under-pants and socks, and you are dressed like a debutant! 
lol shes that arrogant she prob would sit there naked and feel it was ok lol
🤣🤣🤣
hi forgot to say all my results are from different times so can’t remember all but latest from medicheck was 8.30 and the October ones was 8.30 but that was only tsh which was 13.6 am just terrified that I won’t get help and will have to live like this forever . I am going to loose my job soon been absent for that long . Feel like my body is shutting down slowly. Can’t understand how doctors can leave someone in this state . With no Qol at all . Every day I dread .
Testing TSH at 1.30 pm is obviously going to give you a low TSH. If I were you, I would refuse all tests at that time, and hold out for a better time because doctors only really look at the TSH. They just don't know anything about the other results. And, to be honest, they don't really know anything about the TSH, either!
I agree with you, I don't know how they reconcile their consciences with leaving people to suffer like you are. I wonder how they manage to sleep at night.
Just another day at office for them and As I don’t know what I need I can’t argue coz not that I have strength I just am in tears all time it’s dreadful and debilitating . 😦🥲🙏
But that's why you're here, to learn what you need. And the first thing you need is your blood taken before 9 am to give you the highest possible TSH.
Those results out on in my opening message where 8.30 done with medicheck not gp xx
OK, well, what your endo is waiting for is the TSH to go over-range. They just don't believe you can possibly have hypo symptoms if the TSH is still in-range. Which is utter rubbish, of course!
But, as you have Hashi's, the damage to your thyroid is going to get worse and worse and eventually your Frees are going to drop below their ranges. And that should cause the TSH to go over the top of the range. So, then they should take notice. I know it's hard to wait, but what else can you do?
Have this private appointment on 2nd April with thyroid clinic Bristol of the list download have made my gp aware of it . Call from my nhs hopeless endo on 22nd whom is really not interested about my illness . If I present all this info she will just ignore it . Everything you say makes so much sense . Can you imagine if I tell endo my frees are low and need to be at at least 75% she will just evade issue and proof and don’t think she will read all guidelines you have all sent even though some of the symptoms you can see visually. Really is so neglecting how we are treated isn’t it . How the hell do we get them to recognise and learn coz at my hospital it’s obviously not patients well being and safety its money and protocol . It’s so sad 😞 what the nhs as become .
I agree with you. The NHS is no-longer fit for purpose. It's all about money, now, and that was not the original intention! But that's the modern world for you! All most people think about is money.
Hope you get on well with your private appointment. Not long to wait, now.
Thank you so much your all so supportive and I feel like a burden with all my questions xx🤗
I actually work for nhs and can’t get help what a joke !!!!!!
You're not a burden, don't think that. That's what we're here for, to help where we can.
can I ask you do you know which at the best written guidelines pointing out how hashimotos should be treated and what guidelines are official protocol that nhs endocrinology staff should be using . I ask because I want to be ready when I have my appointment next week with her and point my endo to the official guidelines she should be following for hashimotos and thyroid problems . I am thinking that if I am prepared with all the info and my symptom list she cannot use her “I know best attitude” lol and can I say to her if she won’t help I want to be referred to endo with knowledge of guide line and thyroid probs . Do you think it will help xx 💕
I'm afraid I can't answer that question. I don't know much about guidelines. I would suggest that you start a new thread asking just that, so that those that know can reply. This thread is a bit old now, in forum terms, and not many people will be looking at it.
If you have a rummage around here your will see what her guidelines are... nice.org.uk/guidance/NG145
I am so sorry to hear this, sending you a huge virtual hug please dont be put off by cold gps keep advocating for you!! Women are notoriously gaslit by medicine we need to speak up keep going get answers xxx
AM SO TRYING TO BE HOPEFUL but dont know how long can take this i am like a bomb waiting to go off feel so frightened because get worse every day 🙁
Jemjet, is it at all possible for you to see another GP? So much has changed since Covid, it is difficult to see a GP at all..... but if there's a chance of seeing a different GP you may get better help....some help?
I was similar to you in that my thyroid results came back as "in the normal range", and despite a long list of hypo symptoms, no help was offered nor given for years. Finally I felt so very ill, I asked my GP what he thought was wrong with me if it wasn't my thyroid. He said that he, (and the other GP who had simply gone along with the results) had been convinced I was hypothyroid, and he offered me a trial of levothyroxine.
my gp is good its the endo that a nightmare 😱 think she specialists in diabetes so only works with basic thyroid probs my gp is pretty good but haven't been able to see him since October but finally got appointment after complaining .🙁
I have found one in Bristol of the list sbo have made appointment for 2nd April guna have virtual appointment if I have to go to Bristol I will am that desperate she has hashimotos too 😢😱
Is she a private GP specialising in thyroid issues? Only my HRT doctor recommended a woman doctor with Hashimoto's in Bristol to me. But I don't need a different doctor. I'm DIY now. But I did read her web site and thought she might know what she was talking about, at least with Hashimoto's.
Yes that’s her she seems good but she can prescribe as well xx
Yes, so very handy. If you try NDT or T3 and at some point can't see her for some reason, you can have a telephone consultation with a prescriber at Roseway Labs. It's a reasonable cost, less than £40 when I last had one, and so you can buy NDT from there then. It's good to know that service is there in the background. I pay to see a private end. He was great with Liothyronine prescriptions but he won't prescribe NDT so I use Roseway because I am currently on NDT. I like the slower action of the T3.
I am hoping if I need t3 I can get on a prescription from my own gp if she writes to him . I don’t know how it will work according to advice from all you wonderful people my t3 and t4 are low on conversion just preying for help soon as my body feels like it is slowly giving up . How do they dose not and is it expensive ? Am now on half pay think am going to get dismissed been of since last august . Work in nhs and can’t even get help 😦
See what the doctor has to say. You may not need T3. You might be able to increase conversion in other ways she may know about.
At this point I need anything to help coz I rely do feel so poorly all time . This doctor is in Bristol I am in St Helens so no idea what will happen as there’s problems 300 miles between us . I am so totally at the end of my tether and really not functioning . 💕
It doesn't matter where she is. I'm sure it will be worthwhile. My HRT doctor was full of praise for this person.
You might also need some HRT now to sort out peri symptoms. I didn't know I was peri. Didn't know what it was at the time. But I would just cry so easily at anything, often at nothing. And fluctuating hormones will make you tired and remove your drive.
I am post now been on body identity for many years xx . so glad she has good praise really hope she can help and also write to my dr If on 22nd next week my actual nhs endo doesn’t help I thin am going to have rely on my dr coz he said can change the endo but most likely take 12to 18month to get an appoint at royal Lvrpl hosp . 😘
you said
October ones was 8.30 but that was only tsh which was 13.6
So in October your TSH was 13.6?
You should immediately have been started on levothyroxine with any TSH over 10
Have you got a ferritin result ?
Not what you're looking for?
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