I’m sure I have hypothyroidism, I have all the symptoms and especially worse in the autumn/ winter. I’d go won’t prescribe ldn or levthyr ( can’t remember how it spell it) is there any supplements available I could try that might benefit? Thanks
Sufferer if m.e: I’m sure I have hypothyroidism... - Thyroid UK
Sufferer if m.e
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Beads73
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Jaydee1507Administrator
Welcome to the group.
ME is often a misdiagnosis of other conditions including hypothyroidism.
Have you had any bloods for thyroid taken lately and can share the results? You are legally entitled to a printed copy from your GP reception. That or get the NHS app and ask for access to blood results again from GP reception.
When you have thyroid bloods taken get them done at 9am or as close as possible as thats when TSH is at it's highest.
Have you ever had thyroid antibodies checked? Also get them to check ferritin, folate, B12 & D3. GP can do this.
If GP is not being cooperative about tests you can buy private blood tests from several companies. You need an FT3, FT4 and TSH plus antibodies and key vitamins I have mentioned. When you have the results post them here.
thyroiduk.org/help-and-supp...
hi I had thyroid test done in September and gp said they were normal. I have really slumped since nov/ dec, and have asked for a gp telephone call, but was told the won’t test so soon. So was wondering about doing it privately or before that was there any supplements I could try that would boost my metabolism.
Your could try some selenium, that supports thyroid function. We don;t recommend multi vitamins as they don't contain enough of anything and often cheap quality plus have iron or magnesium in them that prevents absorption of the other vitamins.
Can you get a copy of you last results to post here?
I could try, I heard if u have a test privately , your gp will not act on it, is that the case? So I will need to see a price dr anyway, thanks for your replies
If there is something abnormal on your private test results then your GP will want to run their own tests to repeat yours. Sometimes if you use Monitor My Health that is an NHS lab and GP might accept those. Don't forget the discount code in the link I posted earlier.
NHS tests often only include just the TSH, occassionally FT4 and almost never FT3, hence to properly see whats going on people here pay for private tests to monitor their condition.
thanks so much! I will look into all of that
trying to register with monitor my health, awaiting code to be able to login since 12.00. So flustered
Don't waste too much on private just take the levothyroxine it don't work but works s bit. Nothing works in winter take a multi or thyroid vitamin. Vit D definitely but you ll be worse in winter sun time you boost naturally. It has 200 functions the thyroid and levo is responsible for 2 , metabolizing summer. Vit D and even C sometimes E evening Primrose ashwangnda . You may well have wat U have CFs/ ME with thyroid and nothing can do it's just pacing small amounts of different things in balance u need self discipline to force yourself out but force yourself to rest. Plenty of CFS/ME groups online
I take everything you suggested and more, I can’t get a prescription for the medication without dr seeing results
Here a test from September, does this make any sense to you?
Sept test
That seems to be some sort of summary. I can't see any actual results? if you can get the NHS app, then ask GP receptionist for blood test result access you can see them in the app. That and I'd go back for the actual results.
so those numbers in brackets are not the results them, that is all they gave to my hubby. I’m awaiting for the dr to authorise a login for the nhs app . Thanks
It's a strange thing. They just seem to have given the reference range which are the numbers in brackets but you would usually see the actual number that your came back as. e.g serum ferritin 45 (30-150).
ok, thanks, why would they do that , very annoying
The comment on the sept test for TSH (Thyroid Stimulating Hormone) result is 'normal ' ~ So that would 'imply' that the result WAS within the ref range ie [more than 0.27 and less than 4.2]
But until you actually see that result with your own eyes .. you can't be 100% certain that it was within range . it is possible it was 'very close but not quite' within range .
(it's also possible that it was well outside the range and whoever wrote 'normal' is just blind ~ or made a mistake )
Some of the other results have 'OK' after them rather than 'normal' .... that 'usually' means that 'the result was a little bit abnormal but not abnormal enough to concern the GP at that time '
But that is all supposition until you see the actual result , so get them to give you the actual result .
A 'normal' TSH result for that range could be 4.199 [0.27-4.2] it could even be 4.2
and if it is anything over about 3.5 , then while it is technically within the ' normal' range , it is far from 'happy' for the majority of healthy people ( 1 o r 2 ish is where most people are when thyroid is healthy/ happy)
You can see how uncommon it is to have TSH over 3. 5 ish on this graph healthunlocked.com/thyroidu...
don’t take their word for it.Ask for a copy of your results for your own records from the reception at the surgery and then post them here for comment. It’s strange what some GPS consider normal.
thanks, I’m going to chase it up
if TSH is above 2.5 Id be suspicious the thyroid is struggling if it’s above 5 and you have symptoms you should be allowed a trial of Levothyroxine. They often leave it to rise till 10 which is criminal you would likely feel very poorly with it coming up to 10. The whole diagnosis business is a scandal. There is something called vetavive that you don’t need a prescription for you could try if your numbers are not good. I have never used it but some here do well on it. It’s best if you can get the GP to put you in Levothyroxine.
Crucial to see your tests with your own eyes before accepting what GP says, then post them here for help with interpretation. Doctors, including endos, often consider anywhere in range as normal which is clearly absurd given that some of us need our thyroid hormones near the top of the range to feel anything like well
Obtaining copies is a simple matter of asking for them as it’s our legal right to have them if we want them. No need to speak to GP, reception will provide copies. You can ask to have them posted, collect them yourself or see them online if your surgery provides that facility
Hi, I'm very similar and I was diagnosed with chronic fatigue/me. My tests are always "normal" as per gp and I suffered for years. I suspect I wouldn't be prescribed levo if not for the Substute Thyroiditis caused by Covid in 2020. My tsh at the highest was just under 3 which is writing the range 0.3-4 but I was very symptomatic. The same as you, I suffer terribly in winter and dead it every year. I noticed higher difference in my Simpsons since being on levo but also when I take order doses of vit D (try Solgar 4000 IU at Holland and Barrett, also vit B12, magnesium and vit C) you should feel better especially after D and B12. And get you test results here so we can have a look. Good luck!
thanks, I’ve been on 4000iu vit d and k2 daily and having b12 injections now every other week as has not made any difference. I’ve order a thyroid test privately so I’m hoping this is the problem as nothing else is helping
Too much vitamin d can make you feel rotten as it puts pressure on the kidneys.
I up it last week from 2000 daily, I’ll keep that in mind, thanks
Oh, I wasn't aware of this.
as well as those vit’s mentioned ferritin, folate, D and b12 a strong multi B vit good.
Also Dr Myhill has a very informative online site about ME and diet required etc. she has also written books.
Are you on FB there is an excellent page on there for Vit D supplement support, I would suggest you join that before taking a high dose of vitamin d. Please post your results, as previously said you have every right to have a copy of your results, I have the NHS app and access mine as soon as they come available. Great app to have, it will show you past test results also. Come back if you need further assistance and support, happy to assist if able. Have a lovely day, we all have a battle one way or another on here, you are not on your own. Take care 🌺
thanks for the advice on the application, will deffo be easier than sitting on the phone
On blood test stop or check if your B12 contains Biotin
2 days before test. It affects TSH and T4 for results.
There are some posts on here about taking your own blood sample. Video on monitor my health is good.
Things I remember :
a) warm hands in hot water for 2 minutes to get blood to your hands
b) stand up (get hands below your heart )
More on Thyroid UK website about it
Good luck
SlowDragonAdministrator
No results on here
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am
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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
As the others have said, ask for your full results.
I was tested 10 years ago as said I had debilitating fatigue and migraines. This was before I had patient access to view my results and also before I knew anything about the thyroid or this fabulous forum.
They did check my ferritin/iron and came back to me with “your iron reserves are low” so I took iron tablets for 6 months.
Then went back as still felt terrible about 6 months later. Still nothing from them.
It turns out my TSH was 5 when they tested both times. The ref range was 0.5 - 5. If I had known what I know now, I would have been pushing for more tests and a trial of levothyroxine.
3 years after the first TSH test (and a new doc) my TSH was 10. I was then put on levo.
Don’t give up on yourself or take their word for “normal” being normal for you. Read everything you’ve been advised to do on this post and come back soon. Hopefully you will get some answers and be able to feel a lot better very soon. ☺️🧁
M.E can be solely a misdiagnosis of missed under active thyroid but an under active thyroid can also be co-morbid with M.E. I have both. I take T3/T4 combo but still have ME as well.
do you feel much worse in the winter months? ( before you started on thyroid medication)
Or is it adrenal exhaustion because you needed steroid support when commencing thyroid meds.
how is ME diagnosed? Is it a blood test? Jo xx
M.E ... CFS/M.E .... M.E /CFS does not have any positive diagnosis as such ,, it is a 'diagnosis of exclusion'
If you have 'the right number' of 'qualifying symptoms' that have lasted 'x' long and all other causes for them have been excluded~ then you can be 'diagnosed' with ME.
What exactly constitutes "the right number" , "the qualifying symptoms" and "how long 'x' is" is dependant on which diagnostic criteria for ME / CFS your Doctor is being governed by .. there are 2 or 3 different ones in use in Europe / America /Canada i think
If you have another potentially unresolved problem that could be responsible for causing the same symptoms .. then (strictly speaking) you can't be officially 'diagnosed' with CFS/ME.
There are no actual tests for ME/CFS ( well not any that the NHS currently accept anyway )
I wasted 4 years with 'ME' which was basically untreated hypothyroidism, as my GP said my TSH was normal, even though it was 7.5. He was of the belief that it had to hit 10 before he could prescribe anything, regardless that I was bed bound and my hair was falling out. Sadly I was not clued up as I am now, and took his word for it.
wow , that’s awful to say the least. I know I have m.e as I have pem after the tiniest amount of exertion, which can last for days. I’m just more severe in the winter months. So sorry you lost 4 years. It 18 years for me 😢
loads and loads of us on here have PEM.. and not all of us who do would consider ourselves to have ME.. (despite PEM generally being considered to be diagnostic for ME)
....some of us are not sure if we have ME AND a thyroid problem... or whether we just have an inadequately resolved thyroid problem.
I had a clear autoimmune thyroid problem first and then PEM came trotting along in it's wake very shortly after i was treated for hypo . ( then they sent me to see the ME/CFS lot ... but with hindsight i think they should have looked at my thyroid treatment in more detail)
dr my hill ( m.e specialists) says people with m.e often have problems with the thyroid. This is why I’m checking it.
also I have far more symptoms thats what’s listed about hypothyroidism
Hi what is PEM sorry for ignorance!
post exertion malaise.
Post Exertional Malaise ...you do some physical work of exercise ( or even get very stressed/have an argument/ adrenaline rush ) ~ even an extremely modest amount, but if it was slightly 'more' than you can handle .. .. then the next day .. you are unable to think straight, or get out of bed much etc, etc .. feels like the hangover from hell and like you had a whole bottle of whisky the night before ... might last 1 , 2 or even 3 days until you start to feel human again ... it sucks.
I can get it from just brushing my hair, or watching tv. Pem happens 48 hours after for me. I then can’t tolerate light , fragrance, noise, can’t stand or walk or anything
low thyroid/cortisol issue.
I’m thinking hypothyroidism and m.e
That REALLY sucks, you have my sympathy .... i can get away with sawing half a log or sanding half a floorboard or having half an argument before it gets me .
you are very lucky. Im not as good as you in the summer either I’m not as severe from may-October. Dr my hill says thyroid needs help in the winter months, so this is why I’m here.
yes i gave up trying to be remotely functional in the winter years ago ...i now happily allow myself to hibernate from the end of october to the beginning of march .. decided if it's good enough for bears and they don't seem to get depressed about it then it's good enough for me .
yes i am lucky, i know ..there's always somebody worse off. Best wishes on finding a way to improve things for you xx
Thankyou! X
As someone who has Thyroid/ Addison’s you are describing adrenal insufficiency ie low cortisol! You could try DHEA to supplement adrenals if you can’t get or want to go on steroids!
If you see within your comment you mention adrenaline rush - exactly - you have used adrenaline that needed cortisol to support it - hence you are going down into adrenal exhaustion before they pump up again ! You should also ensure you ask for adrenaline free injections at dentist !
a freind of mine who has ME ( but not a thyroid issue) once told me that ME was "like being allergic to adrenaline" , which is the best 'practical' description i've ever come across (even though presumably it's not technically 'correct' )
no it’s more than adrenaline 😊
Weirdly ( or not i dunno ?).. i always feel really good for the rest of the day if i have injections at the dentist .. and also feel totally amazing for about 24 hours starting immediately after i wake up from a General Anaesthetic.. when apparently most people are wrecked and not asking the nurse to "take the drip out so i can go to the pub" like i did.
Apparently once you have hypothyroidism on your medical notes at the dentist, the guidelines are to give injections with EXTRA adrenaline. This is because normal injections do not give the pain coverage required because of the hypothyroidism! I had a bladder op giving me a high dose of something like Valium as opposed to a general anaesthetic. I did not want to go to the pub but I did have 24 hours of bliss. Utter peace from intrusive thoughts of misery and self blame.
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