I'm 55 and have been officially 'ill' since 1996 - I have an alphabet soup of acronymsCFS/ME, IBS, FM, hypermobility, absorption issues, vitamin deficiencies ( I supplement aggressively with B12 and D & I take methyl folate -I take magnesium, zinc, k2, potassium, rosehip, ubiquinol, floradix and a probiotic )
B12 & D have been life changers
I'm on hrt which is not (yet) balanced
I've had my tonsils out and more recently my ovaries - I had miscarriages and an ectopic pregnancy
And I have food I tolerances dairy, egg, coconut, almond & soya
I have many and varied symptoms - usually centering around pain and fatigue, brain fog and memory and since menopause my mild anxiety has ramped up unbelievably
But after a chat on mumsnet, I'm having a closer look at my thyroid - recent results below - I think its fairly unlikely that all my issues are my thyroid but it seems rude not to check
Hi, I would say you have stumbled into just the right place 🤗 which has saved so many of us
Your thyroid is certainly struggling and all the symptoms and intolerances are typical, your TSH is high, fT4 is very low but you'll need to get your fT3 level to really get the full picture. Great that you are tackling your sex hormones
One of the fabulous Admin team will swoop in and give you enough information to make your head spin and set you off in the right direction.... welcome aboard
FT3 is the most important result followed by FT4 but the NHS don't see it as a priority!
For good health every cell in the body needs to be flooded with T3 which must be available in an adequate and constant supply.
IF you have a clued up GP who knows to look beyond TSH alone, then they should be prepared to initiate medication with levothyroxine....starting dose 50mcg with testing after 6 weeks.
I'd start by building your case and approaching your GP!!
Come back with any questions, and any further labs, and members will advise.
Well the TSH 7 and 4 are definitely 'waving red flags' at us . (TSH is most commonly around 1 ish ,,, anything up to 2.5 / 3 is not unusual , but the 4 is very suspicious)
and the fT4 12.3 and 12.1 are also suspiciously low . (some healthy people do have fT4 levels in the bottom 25% of the lab range , but 0% through the range is pretty suspicious)
So yes i think you should stick around here for a bit .
it would be a good idea to get your thyroid antibodies tested to check for evidence of autoimmune hypothyroidism .
GP may be willing to do this for you since have already had one over range TSH result and the latest one is still very close to over range ... but to be honest it's less hassle/ more informative to get a private test done that includes both thyroid antibodies..... as GP will only do one of them.
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies) ~ GP wont be able to do this one
TSH (Thyroid Stimulating Hormone)
fT4 (Free T4)
fT3 (FreeT3) ~ GP wont be able to do this one.
plus Vit B12/ Vit D/ Folate / Ferritin. if you don't already have recent tests for those.
SlowDragon / Jaydee1507 will be able to give you links to some recommended testing options.
NHS guidelines say GP's 'can consider' treating hypothyroidism when they have "2 over range TSH results, taken 3 months apart + symptoms of hypothyroidism" (most GP would say the over range tests need to be consecutive)
if TPOab are over range they are much more likely to treat it .
if your latest TSH had been over -range then technically you would be able to ask for a trial of Levothyroxine now . ( but they may not have agreed if it was under 4.5/ 5 )
can you remember what time of day the latest TSH test was taken ?
TSH is naturally highest very early am and falls to it's lowest every day around 1-3pm . then slowly rises again.
Make sure any future TSH tests are done consistently around 9 am . so results are comparable , (and so GP see's highest level) .
delay breakfast / coffee/ tea until after test . this helps keep test conditions consistent (and breakfast can lower TSH for some people).
NHS won't agree 9 am /fasting test is necessary for thyroid tests so don't bother arguing with receptionist .. just say you can't make it any later due to work or something)
You're going to get lots of questions for more information, but first question is: were all these tests done at the same time of day?
The reason for asking that is that the TSH - Thyroid Stimulation Hormone - fluctuates throughout the day. It's highest before 9 am, then dips quite steeply until it's at its lowest around midday. Then starts to slowly rise again. So, we always advise people to get their blood draw just before 9 am.
Also, eating and drinking - especially coffee - can lower the TSH, and to get a diagnosis, you need it as high as possible.
Having said that, to most people who know about thyroid - and most doctors don't! - your TSH is suggesting a thyroid problem. And an FT4 of 12.1 pmol/L [12.0 - 22.0] Most definitely says hypo.
But, as someone suggested, you do need full thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
That will give you a more complete picture.
CFS/ME, IBM, FM are syndromes. Syndromes are a collection of symptoms. Symptoms have to be caused by something. But, as doctors don't understand - or don't look for - what causes them, they just stick a label on you and say that is your problem. Then, they can ignore you. We always advise people not to accept 'diagnoses' of this kind because they aren't diagnoses at all. And very often the person gets better when their hypothyroidism is finally diagnosed and they're optimally treated.
Vitamin deficiencies are often caused by hypo because hypo causes low stomach acid, making digestion and absorption of nutrients difficult.
Why did you have your tonsils out?
Miscarriages, pain and fatigue, brain fog, anxiety and poor memory are just a few of the possible symptoms of hypothyroidism. But, they are many and varied. So, yes, I think you have come to the right place. And, when you get full testing, we will be better able to help you.
That jumped out …..have you been diagnosed with Elhers Danlos syndrome (EDS)
We have quite a few EDS members on here, most (all?) diagnosed with autoimmune thyroid disease, also called Hashimoto’s
And most (almost all?) EDS members have found they are gluten intolerant and get benefits/need to be strictly gluten free
First step is to get retested including thyroid antibodies and vitamins
Request GP retest.
Book early morning appointment, ideally just before 9am and only drink water between waking and test
If taking vitamin B complex or any other supplements that contain biotin, stop these 5-7 days before test and stop iron supplement 4-5 days before test
Other supplements can carry on until day before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins and NHS only tests TG antibodies if TPO are positive…..significant minority of Hashimoto’s patients only have high TG antibodies
List of private testing options and money off codes
The is a blog post originated from a radio program by Dr Jessica Eccles about Hypermobilty/Ehlers-Danlos. Despite not being about thyroid, it might well be worth a look and even a listen.
Goodness that's huge amount of info - esp as I have just come out of a private meno appt - she says she will ask the gp for a full thyroid test
So no iron a week before the test can do
But my B12 is injections - how many weeks clear do I need to be or is that the wrong type of b vitamin
My last test was at 9:45; I had the dentist at 8:30 and didn't eat until the carpark after the blood test - I prob had black tea first thing tho'
I've been check (both ways) for coeliac and I was negative I did go gluten free for 6 months but it didn't seem to make a difference at the time
Tonsils out as I spent my childhood having regular bouts of tonsillitis- at uni the gp said enough was enough - didn't stop the infections just moved them
I've always been suspicious of my cfs/me/fm - my brother has RA but no rheumatoid factor just high anti-ccp & he lives in Sweden and they do things differently there
EDS my skin isn't really involved in any of my issues and that's part of EDS isn't it?
I've probably missed loads sorry I'll read back later
Make sure not to have an unusually(for you) iron-heavy meal in the day or two before your test. It can make ferritin (iron stores) look better than it normally would and could be misleading..
my B12 is injections - how many weeks clear do I need to be
In order to get an "accurate" measure of your B12 levels you would have to be off B12 for months. But that is dangerous for people who struggle to absorb B12 from their diets, so it can't be done. The only option you have is to just continue as you normally do with your injections, and test whenever you want to. Your B12 will be anywhere from low to high, depending on how long it is since your most recent injection, and that can't be helped in your situation.
Are you aware that serum B12 and Active B12 tests are not testing the same thing? They have different units of measurement and different reference ranges as well.
The NHS uses only the Serum B12 test. The private testing companies sometimes use Serum B12, and sometimes Active B12. But since you are having injections it probably doesn't make much difference which test you get - the result probably won't tell you much.
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My last test was at 9:45; I had the dentist at 8:30 and didn't eat until the carpark after the blood test - I prob had black tea first thing tho'
The best timing for tests is dependent on the circadian rhythm of TSH. See these links :
Doctors often refuse testing first thing in the morning, and force patients to be have blood taken in the afternoon, thus making sure that the TSH is at its lowest or close to its lowest during office hours. This means that they can refuse or overlook a diagnosis to some people who are hypothyroid because their TSH is not high in the afternoons. This issue is discussed in the two thyroidpatientsca links I gave above.
Tonsils out as I spent my childhood having regular bouts of tonsillitis- at uni the gp said enough was enough - didn't stop the infections just moved them
My tonsils and adenoids were removed aged 10. I've never regretted it, to be honest. I'm sorry that you didn't get a terribly helpful response.
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Your TSH levels are too high for someone who is healthy - see the web archive link above. One problem that you may have already had is that doctors have been told that TSH under 10 is fine, even though it may be more than twice the top of the reference range.
My understanding is that doctors might diagnose hypothyroidism if your thyroid antibodies are positive, and you have symptoms, and your TSH is over the top of the range twice in three months.
For people without positive antibodies doctors might diagnose if the patient has had two tests three months apart with TSH of 10+ and also has symptoms.
I have come across occasional anecdotes of doctors saying that a TSH of 20 or 30 isn't that bad or is "fine", so some of them definitely aren't in a hurry to diagnose. It's sadistic given that some people have symptoms when TSH is 2.5+.
Also the issues you've mentioned above- gut issues/IBS, food intolerance, fatigue, hyper mobility issues, vit /mineral deficiencies, miscarriage are all related- either directly or indirectly to hypothyroidism.
I was brushed off with pretty much all the 'diagnoses', although CFS/IBS are not proper diagnoses- just a collection of acronyms to explain a cluster symptoms that are not really understood or properly treatable , and usually rectified with adequate thyroid hormone.
Your T4 is tanked and your TSH much too high.
The admins will come in with info of that to do next ........
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Your results make me SO cross with your GP surgery. With a TSH of 7 you ought to have been retested in 12 weeks.
But I'm SO glad you're here. You're in the right place and things will start to get better now if you follow the advice here.
Ok, unsurprisingly I got nowhere with my gp (4 months ago)
But on my record a pharmacy tech has booked me some tfts blood tests and sent me an email saying 'please book a blood test' so I have booked
& I also message the practice ro ask what tests I have booked for as they haven't actually told me (stroppy cow that I am; if you book me for blood tests you might like to tell me which ones)
My appt is at 8:30, which I think is good but should I do/not do anything beforehand - I know there is info in all your reply and I'm going to start rereading as, well, brain fog
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My latest thyroid test results
Thyroid, Hair Loss and Magnesium 
Still undiagnosed thyroid issues!
