Please see my results in the image. The report which came with the test said everything is normal, but I have reviewed the Thyroid UK site and I think the very low T4 and above 2.5 TSH suggest that a trial of levothyroxine would be worthwhile.
I have had symptoms for about 5 years and have been to the GP several times with no success and had resigned myself to this new normal, but things have deteriorated. I need loads of sleep, have ballooned in weight, have scalp psoriasis and eczema patches, low libido and flatulence (attractive...) started having frightening choking fits earlier this year, have begun having random muscle pains and joint stiffness plus bloating and IBS type diarrhoea and stomach cramps after eating. Also I have a really hopeless immune system and have been ill with colds and flu all winter. I am fed up of feeling so rubbish and am really hoping that a trial of levothyroxine could help me, but i am worried about being brushed off by the GP.
Any advice?
I should also mention that I am a carrier of the Fragile X mutation with 112 CGG repeats, which puts me at high risk of developing hypothyroidism.
Also wanted to mention that I am a bit annoyed because I paid for the private blood test and checked with Medicare whether I should fast for the test and they said not to, so the blood for the test above was taken on a full stomach.
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Cherryred72
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Sorry I cannot read it on my screen it might be worth taking 10/15 minutes and typing it out including the ranges. Why didn't you follow the advice on this site before taking a blood test?
The only way I have become well after my thyroid was removed was to join this site and follow the advice.
I never ask doctors/endos only the good people on here. I self medicate with NDT
You poor thing- you sound exactly like I felt before I started treatment. The choking fits are horrible- do you get them when you're asleep? Mine completely disappeared once on a suitable dose of thyroxine. Couple of things about Medichecks' comments confuse me- we're often told in here that ferritin needs to be at least 70 for thyroid hormones to work and that around 100 is good. Also- does their comment about folate really say that the new range comes into effect in 2020? It's hard to read on your post. Very confusing- why not now? Hopefully someone on here will answer that.
T3 and T4 are rock bottom of range, there's room to go up but GP will probably say your fine because your tsh is 2 point something and T3 and T4 are in range (albeit, just). Personally, I feel better when its below 1 and was diagnosed by Dr Skinner when it was 3.6. If you're symptomatic I would try to argue it as most of us feel better with T3 and T4 near the top of range but you may struggle to be honest... I don't know anything about antibodies to comment and your vitamin D needs a boost - this can also cause symptoms so maybe get this sorted first. I would discuss your symptoms and explain the gene mutation. If you get no joy, try to get referred to a specialist, you have to be careful of this too I'm afraid as some specialist don't tend to know a lot about the thyroid and know more about diabetes. You can get a list of private ones from thyroiduk. What time did you take the test? This will also have an impact on tsh. Good Luck x
Thank you for your quick replies. I appreciate your support.
Because the image is blurry I will type out my results:
TSH: 2.62 (RANGE 0.27-4.2)
FREE T4: 12.9 (RANGE 12.0 - 22.0)
FREE T3: 4.9 (RANGE 3.1 - 6.8)
Thyroglobulin Antibody: <10.0 (RANGE 0-115)
Thyroid Peroxidose Antibodies: <9.0 (RANGE 0-34)
ACTIVE B12: 146 (RANGE 25.1 - 165)
FOLATE: 9.7 (>2.9)
VITAMIN D: 55 (RANGE 50 - 200)
FERRITIN: 68 (RANGE 13 - 150)
CRP High Sensitivity: 3.2 (0.0 - 5.0)
The only thing which came back in the commentary with the test was to watch the vitamin D. I have been taking supplements for vitamin D for 3 years, since a score of 30 on the same test at that time. Taking 1000ug tablets for 3 years hasn't exactly bumped me up that much!
I only found this forum when I started to question the general feedback I had with the results and read the Thyroid UK advice. that's why I'm annoyed because i feel like I need to have it done again when I've fasted...
In the past doctors have told me that having a TSH over 2.5 (which I understand is the trigger level for medication in Europe and the US), is irrelevant because my free T3 is doing well.
I want to look well-informed about why that sort of response is not helping me and go into the GP saying clearly that I want a trial of levothyrixine because of a) high likelihood of developing hypo due to genetic mutation b) loads of symptoms c) advice from Thyroid UK and support forums that my results are indicative of value from a trial.
I am scared of being fobbed off though.
I booked a session in worth my GP but it isn't until the 20th July, so loads of time to get prepared (or lose my nerve!)
The choking fits happen in the day. They are frightening because I stop being able to breathe. Also my stress incontinence (due to 2 forceps births of massive babies 😲) kicks in and I'm a purple, damp, terrified mess. They don't always happen when I'm eating or drinking either - sometimes I'm just sitting there and it starts happening. I'm hoping that the GP will be sympathetic to the fact my symptoms have gone beyond the vague - I'm tired all the time - to something which is actually unusual and indicative of something.
Anyway, I'm really grateful for your support. I have low self esteem about the weight gain, and diets are really demoralizing as I barely lose any weight (4lbs after 3 months on the 5:2 the last time I tried). Talk about a lose-lose 😉 My partner is not very supportive. He thinks I am clutching at straws and should just knuckle down to a proper diet like him. All supportive comments therefore really welcome!
Low-calorie diets are counter-productive, so I wouldn't do that, if I were you.
Choking on your own saliva is a hypo symptom. I know, I have it. Less now, but it still happens sometimes, and my airways close up and I cough and cough and struggle for breath, and people want to pat me on the back, which is really annoying! But, the problem is, doctors know nothing about symptoms. Especially not a lesser known symptom like that. They are all about the TSH. I'm not sure that fasting makes a lot of difference to your TSH level, but time of day certainly does. TSH is highest early in the morning, and drops throughout the day. So, with a home test, doing it about 7 am would be the best idea. Before breakfast, even better.
But, the medichecks doctor comments really aren't worth having, because they just tow the party (NHS) line. They don't really know anything about thyroid. You won't get any revolutionary new insight into your results, I'm afraid. You'll get better comments on here!
Your FT4 is very low. The surprise is that your FT3 is mid-range. So, that does rather rule out Central Hypo at this stage. The FT3 could drop, of course, as the TSH fails to stimulate the thyroid to make more T4 to convert. But, at this point, you don't have enough evidence to convince an ignorant GP to refer you to an endo. And only an endo can deal with Central hypo, not a GP. Your TSH just says that your thyroid is struggling - but a GP wouldn't even know that!
So, at this point, it's a waiting game, I'm afraid. Waiting to see if your FT3 drops, or your TSH rises. So, during that time, it might be a good idea to optimise your vit D3 and your ferritin. They are both rather low and will be causing symptoms of their own. And, I would recommend you get another thyroid test in about 3 months time.
Poor you.....your GP needs to step up....or find a new one.
I choke quite often but clearly not as severely as you...it's horrible.
Do you do pelvic floor exercises?.....a specialist nurse helped me with that....I was prescribed Mirabegron about 3 years ago when things got "leaky"... and continue to take it. Almost no accidents now.
I also had a forceps birth... at age 35..and an episiotomy....ouch! That baby is now 38!
I was also prescribed Methenamine when recurring UTIs failed to clear... on advice of a microbiologist who thought the UTIs were a red herring...it is anti bacterial rather than antibiotic and certainly helped me.
The incontinence may improve once you are correctly medicated with thyroid hormones ...and vitamins and minerals are optimal
As I suggested earlier, stay here, ask questions, follow advice and keep at it...you are NOT just clutching at straws you are taking control of your health/life...and that shows courage. ...your partner needs to understand that!
When things got tough I always thought of Bob Marley' s words (I'm very old so maybe that name means nothing to ypu!!)
"You never know how strong you are until being strong is your only option"
Folate is low. You may benefit from daily good quality vitamin B complex one with folate in not folic acid
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
I havemanaged to read, your Low T4 does indicate som e thyroid hormone replacement would be helpful as do your symptoms. I have never heard of this genetic condition before can you tell me abit about it. In future your bloods need to be taken first thing in the morning before food. It apparently helps to raise your TSh a bit if you are woken up at 4am ish then go back to sleep.
Even if you had done this I doubt you would have your TSH up to a level that would impress your GP or initiate treatment on the NHS.
Your options are to either self treat as I do and there is lots of information and support on this forum to help you do this safely or you can pay to see a more helpful doctor a list of whom can be obtained via an email address on the Thyroid uk website or you put upa fight with your Gp practice adn NHS that might not succeed.
At one time your combination of symptoms would have led to some more investigations but these days it seems that most GPservices are almost like a facade that is there to prevent access to care rather than the opposite.
I would do another test following TUK advise - fasting etc - before proceeding further. That way you will get a true reflection of your thyroid health and based on more accurate readings you will receive the right advice.
Did you miss that advice when you were reading posts here....or disregard it because of Medicheck instructions? First lesson learned...pay attention to advice here, It is hugely reliable, This forum helped me when nothing else did
Like those of us here you may have a mountain to climb...but with much patience and determination and the amazing help offered here it can be conquered!
Hi Cherryred 72 sorry to hear You are feeling so bad, your t4/t3 is definitely at the low end but unfortunately Gp's will rarely give you thyroxine unless your TSH is alot higher than yours. Your vit D levels need to be higher and you probably need to do a loading dose then carry on with a maintenance dose, my vit D levels where very similar to yours at 52 and I was advised by one of the admin on here to take 5000 a day for 2 months and then alternate days for six weeks then test to see how my level was then take maintenance dose from then on but check levels couple of times a year. Have a look at Seaside Susie posts she gives very good advice about how to raise vitamins levels and she is very knowledgeable, low vit D can cause joint aches and pains as it did in my case. I've found taking 1000mg of vit c daily helped to stop me getting colds and if I do get one I double the dose for a few days and it seems to get rid of it really quickly ( only had one cold this winter and it only lasted 4 days ).
Your stomach problems could be down to low stomach acid as lots of us hypos suffer from it I take apple cider vinegar to help with mine but there are other things you can try the names escape me at the moment but I'm sure someone else on here will be able to tell you, also you could try going gluten free lots of people on here have found that helps with their stomach problems. GP's really don't know much about vitamins they think any where in range is fine but for people with hypothyroidism we need to have our vitamins at optimal levels. These are just a few things that have helped me back to good health and I hope this helps you, good luck with your GP appointment. Linda x
Hello Cherryred72 I'm so sorry to hear you're feeling so underpar and of your frustration with getting the right advice / treatment.
I happened upon your post, not as a thyroid expert, but I have achieved and maintained successful weightloss also with a fairly low metabolism.
It may not be easy but it's certainly not impossible for you to lose weight, and importantly by eating proper healthy food. Have a look at Health Unlocked Weightloss forum, its an incredibly supportive site and you will get sound advice and support from everyone, including fellow hypo sufferers. It's not "a diet " it's a healthy eating lifestyle, eating normal foods and maximum calories possible for your personal metabolic rate (BMR). I will look forward to seeing you join us there..😊
Hi Cherry, your thyroid hormone affects smooth muscle. Your throat and bowels are smooth muscle. As others mentioned, vitamin D is very important to your other hormones, as a prohormone it makes others work. One thing that blocks thyroid hormone is excess estrogen. I found progesterone cream helpful. We get estrogen from our food and the pesticides on our food. Therapeutic doses of vitamin D3 can be 15,000 i.u. twice/week or even more so you may need that.
What's puzzling is your high FT3 relative to your FT4. Your thyroid gland produces T4, T3, T2, T1 and calcitonin. Some of the T4 will convert to T3 which is the active hormone and be available to cells but the ratio is about 4 times more T4 than T3 so can you see why that is unusual to have a higher T3 than T4. Your cofactors aren't that good to explain this overconversion so I can't understand this. The only other aspect is your cortisol levels. Either too high to too low, it will interfere with thyroid production because your adrenal glands will turn T4 into reverse T3 . Really, your case is unusual I think.
Thank you for taking the time to reply. You mentioned reverse T3. I wondered about getting that measured but the advice on Thyroid UK didn't recommend that to give the "full" picture of thyroid function.
Do you think it would be beneficial for me to have another test, but fasting this time, and including reverse T3?
I suspect I do have high levels of cortisol. I am an anxious type, take 10mg of Citalopram every day (have done for around 8 years) and have a relatively stressful lifestyle - my daughter has Fragile X Syndrome and autism, and I work long hours.
Is there a better test which would reflect this combination of issues than the Medichecks Thyroid Ultra Vit I had before? You might need to direct message me that as I'm not sure of the rules about recommendations.
I would ideally like to see a specialist as the information I'm getting here is somewhat confusing and I'm not sure I will have a successful outcome with a visit to my GP. Also my appointment isn't for another 5 weeks and I feel like I want to get moving with some help and support sooner than that as the symptoms are difficult.
Yesterday for dinner I ate a salad my partner had prepared. It contained a salmon fillet, some homemade egg mayo and homemade potato salad including homemade mayo plus the usual green leaves etc. I had a small glass of white wine with it. I have eaten and drunk those things countless times before but I felt so ill about 20 minutes after I'd eaten it. I had cramps and felt extremely nauseous, was sweating and panting, and had a loose bowel movement with cramps. This lasted around 2 hours. My partner was completely fine. I have no idea which element of that meal caused me to feel so bad or maybe it is just random? I certainly feel like the choking fits are random. I am currently in a lull for those, thankfully, but only a few weeks ago they were happening more or less every day.
Some people have suggested that I take some really high doses of vitamin D but I have no idea how to go about finding them or dosing myself appropriately - should my GP do that?
Before my blood test I had refreshed my Vit D tablets with 400ug ones as I thought, being the summer, I probably wouldn't need the 1000ug variants I usually take. I went to the health food shop and bought a new pack of my usual 1000ug ones yesterday, but I do wonder if it would be ok to take more than 1 tablet per day of those.
Someone mentioned about Zinc being beneficial and my homeopath had in any case tested me up as needing Zinc ascorbate tablets last week, so I have already started on those.
Over the winter I was taking vitamin B complex, vitamin D, vitamin C (1500ug time release but it didn't do anything to help with the colds and flu), Orac Omega, glucosamine, magnesium, probiotics and my Citalopram daily. I rattled.
We recently went away for a week and I decided only to take my Citalopram and probiotics with me. All my face spots cleared up. Obvs it could have been the relaxation and the sunshine as much as fewer tablets, but I thought I would test out easing up on the supplements for a bit. My skin has stayed clearer.
I'm now back on the Vit D and also taking the Zinc ascorbate, as described above, alongside the stalwart probiotics and Citalopram.
3 years ago I was prescribed a progesterone cream from the Marion Gluck clinic. It was there I was told that my thyroid was performing well as my levels of T3 were good (My results at that time were broadly in line with those I've just had, albeit a bit better that the latest ones - TSH then was 2.2 against the same range). They suggested I give the progesterone a go to deal with my symptoms and I used it for a while but I didn't feel any different and it was £80 per prescription so eventually stopped using it. I still have it in the cupboard so could start that again, but it might have a limited shelf life I suppose.
I feel like what i need is a doctor to take a holistic view of me, with my premutation and all my symptoms, to take the right blood tests to make a decent call on what's going on. I am a bit scared of locking myself into a private doctor at extortionate rates but I also feel like the nhs is unlikely to give me what I need.
*stuck face*
Fragile X Is a neurological condition, so I also don't know if what I need is a neurologist or an endocrinologist. I have emailed Thyroid UK asking for the list, but that will be GPs not specialists.
If anyone has any recommendations about good people to try I would be so grateful to receive them via a direct message.
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