So, a little background. My mum had hypothyroidism, and a few years ago, I started to recognise in myself quite a few of her symptoms, so I went to my GP and set out my stall. They did a blood test, and told me I was fine. Knowing no better, I went away, puzzled about the cause of the dozens of symptoms I had, but, hey, my thyroid was OK, right?
A while later, no better, I tried again. Same process, same outcome. Still, I had no real clue.
Then, I started to notice my expanding girth, so I went on a diet, upped my exercise, and lo, nothing happened. As in NOTHING. I was eating like a mouse, cycling, hitting the gym three times a week for cardio and weights, and lost......no weight.
Also, I went for a smear test and the nurse kindly informed me that at my previous smear test, I’d tipped the scales at almost 20kg less than my current weight.
Now, I’m no medical professional, but I know a problem when I see one, and my trousers said that his was one.
So, having read up a bit about this whole thyroid quagmire, I got a full set of tests done privately. Looks like I was right! (Just call me Sherlock).
Anyway, all I have to do now is see my GP, which is almost as easy as getting an audience with the invisible man. But all is not lost, because once I’d phoned the surgery and found out that all the appointments for early March are sold out, I thought I’d use LIVI, which some of you may know, but others can probably google.
LIVI only made me wait 5 hours to see a GP’shappy, smiling face on my phone, and she happily told me that now that I’ve paid to have all these tests done privately, I can have them all done again on the NHS....before they’ll decide whether to treat me and what treatment to give. So, I’ve just spent good money to get the NHS to test my blood beyond the “basic” test, and now they’re going to do it again.
I’m off on holiday on Friday with my new wardrobe of larger-than-last-year holiday clothes and a smug “I told you so” grin.
Slight downside, we are off to Thailand...if I end up in quarantine when we get back, I may be waiting a long time to get this thyroid business sorted...
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Croixblanches
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When you get your blood results, please post them, along with the ranges [which vary from lab to lab] so we can see how you are doing both from your original tests and the next batch.
Ideally you need: TSH, free T4 and free T3 [for some reason the NS will often only test TSH or venture cautiously into testing T4, when T3 is arguably the most important] and thyroid antibodies, and key nutrients - folate, ferritin, Vit D and B12.
You can find masses of useful info on this site, and the Thyroid UK site - and helvella has produced an excellent glossary if you aren't familiar with some of the terms.
When you get back, DON'T allow them to fob you off with things like "you're within range" ... if the T4 range is say 12 - 22, there is a world of difference between being at 12.2 and 21.2 - but both are "within range"
Yes, I am starting to understand all this. Not well enough yet, but I’m getting there!. My lab results have FT4 at 12.1 and FT3 at 3.8, so both teetering on the bottom end of the “normal” scale, but TPEX was 600.1, which is higher than a very high thing, and TGAB 729 so likewise.
I’m also a little bit cross, to say the least, so I will be making sure I insist quite strongly on something being done, as I’ve been fobbed off already twice...
If your GP is inclined to fob you off, it is often worth taking a man with you to the next appointment. It sounds pre-historic to say it in 2020 but far too many doctors treat us as hysterical women when we are on our own and totally different when we bring a bloke along.
My OH is, I have to say, a more level-headed and rational person than me. I’m quite forceful and prone to being overly blunt. That said, he was the one this evening who was saying “I’d complain to the Practice Manager” and “You should get them to refund you for the private tests”
I’ve actually been fobbed off so far by a male and a female GP. my FP practice is an equal opportunities fobber -offer!
What is your TSH? That is likely to be the only one the NHS takes notice of. They want it to be 10, even though the ‘normal’ range ends around 4 something (depending on the particular lab’s range). But as you have Hashimoto’s and symptoms they should treat you if it’s lower than 10. Good luck!
So you may have a bit of a battle then. I can’t remember where it’s written but I understand if your TSH is over range but under 10 and you are having symptoms, especially if you have Hashimoto’s, they should treat you. Maybe the new NICE guidelines? I’m sure someone will come along with the answer to that one!
I know...yet the antibodies are off-the-scale high.. maybe I’ll try the tack I used with the up-himself junior doctor who (after my GP and two other doctors had agreed it WAS appendicitis) suggested my 11 year old son might just have stomach cramps. I smiled sweetly and said “OK, let’s hang on till he gets peritonitis, shall we, and then you can be sure?”
(Happy ending: he was overruled by his senior, who operated immediately, and, boy, did he look sheepish on the ward rounds next morning when his boss said “Yep, it certainly needed to come out!”)
I’m going to swot up on all the things they’ll be needing to treat me for if they don’t start treating me now, and point out that I’m only presenting with my symptoms now to save them money in the longer term...
Thanks for the welcome! I’ll certainly come back once I’ve had the tests from the NHS, but also I’m keen to try and push for ALL the ones I need, and not to get fobbed off, as I was last time, with “Oh, your results were fine so we won’t do any additional tests”..grr...
I have been a size 14 and I am now a size 10. I have a couple of wardrobes one for thin clothes and one for fat clothes. You are not the only one who has gained weight because of thyroid disease
I’ve been spoiled in life as I’ve never had to diet until now...and now nothing happens when I do diet! My son gets married in July and I’m hoping I don’t have to wear a kaftan. I’ve hung on to all my smaller clothes, and just hope that I may get to wear some of them again!
Frequently the lab overrules GP requests on testing
Suggest you add your private test results and members can advise on next step
For example improving low vitamin levels by self supplementing can help improve symptoms and help get underlying thyroid issues treated
Did you get thyroid antibodies and vitamins tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Thanks for all that, it’s really helpful. I’ve partially posted the results I got above. The test I got done didn’t cover vitamins but TSH, FT4,T3 , T4, TPEX and TGAB were all done.
Your TPO antibodies are high this confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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
Just out of curiosity, if I can ask: it’s only just dawned on me, but if I’ve had private tests (and you seem to be suggesting that doing so is almost the norm, if we want to get anywhere) and doctors or labs refuse to run the full range...why is it that the doctor I saw yesterday has said I’ll need to get my blood tested again (by the NHS) before they’ll consider treatment?
Is it just a demonstration of (expletive deleted) ? Or is there a bizarre logic lurking somewhere that I’m missing?
I imagine we all would be better off seeing the invisible man than a real doctor these days but on the subject of laughter being the best medicine. I believe and it was one of my grandma vets theorys that laughter is a response to often little funny shocks, something said or done that is a little bit alarming to trigger the laughter. This sets off the laughter in which we tend to often shake quite a lot, and judder our diaphrams it is a very physical reaction. I belive this reaction is a way to release stress, trauma, unconscious tension in the body. The little shocks administered by comedians helping release the physical impact of the big shocks in life that have made us ill. There are therapist in the world that do exercises where you shake or move about in group to remove trauma but much cheaper to watch back issues of 'some mother do ave um'. The other very effective therepy in life is based on the euphemism 'An apple a day'. The recommendation had nothing to do with something in the apple, apparently it was what we do to an apple that is relevant .'Pain hurts, pleasure heals'.
That is so true I have a sense of humour and I am always joking about stuff. My husband tells me off and says I am very childish but I don't care. I tell him he is turning into Victor Meldrew and always moaning about stuff and actually rarely smiles.
You will live longer than him. You have to have fun in life. The community I grew up in in Cornwall used to have go crackers days, where every body had to do something mad and we used to have go crackers partys. I wish we could have a national 'go crackers' bank holiday. it would be so much better than 'mental health day' for our mental health.
Laughter and Positive Attitude is the Best Medicine . It's so true . Being grumpy gets you nowhere other then no one wants to have anything with you . Hold on to your Great Sense Of Humor . People will want to be around you more .
Hi I gained lots of weight I have Cushings ask for your cortisol levels to be tested and 24 hour urine I think more people should push for the cortisol infact it should be mandatory it sends your body haywire weight wise it causes a lot of different problems I’m not saying for a minute you have it but I really do wish someone would have mentioned it to me to give me the heads up but they say it’s very rare it’s probably not at all but doctors don’t think they will have a Cushings patient.. fact.. you have to be your own advocate with gps I’ve found as I diagnosed myself.. so at least you can go armed with this and ask I wish you well and have a great holiday.
Thanks! Sorry to hear you also had weight gain problems. It certainly doesn’t help. I sometimes feel when I visit the GP as if I’m doing the job but without the salary. I do feel sorry for the pressure they must be under, but I’m not sure it should translate into many people being made to feel guilty for bothering them when we are, in fact, ill.
I don’t feel sorry for the gps they should broaden the horizons and venture more instead of classing people as overweight.. diet!..anxious.. tablets!..one doctor told me to buy calms! If they treated the cortisol and the problem I would have bought thousands... in my case I have had to push them every step of the way Cushings causes anxiety panic etc endless problems I have had doctors look at me as if I was a neurotic wreck well I proved them wrong I’m now waiting for the operation in March .. red flags should have gone up in July 2018 when a guy doing a x Ray asked me if I was on steroids.. no I wasn’t.. the list is endless and I don’t want to go on about myself I just want to alert people of this disease I have read many blogs of people mainly in USA who all don’t want people to suffer but needless to say the doctors still don’t listen so you go tell them what you want test wise and don’t settle for any less I’m sure you won’t and you just have to make yourself heard good luck take care.
Hi, I was in a similar situation 30 years ago. My Mum had been diagnosed as hypo in her early 20's and had been told then (1970) that it was hereditary which a lot of Drs didn't accept at that time. Anyway, when I got to about 16 she started noticing I was going a similar way and took me to Dr - bloods always fine. Then got to about 23 I was eating nothing and literally swelling up went to Dr who told me to go on a diet, went home crying, Mum not happy. Upshot went back to Dr with my mother, it was my usual Dr this time and we explained everything and even though bloods always ok they were on the low side so she sent me for scan and came back there was a swelling. Since found out that the parameters for the blood test in the UK are too wide and people on low side should probably get treatment before symptoms get worse. I have been fine since (although still not exactly slim!). Additionally, my brother has now been diagnosed as hypo. Also, at least one of my Mum's brothers had it and my Mum suspected that her mother had it but never diagnosed.
...yet the nice GP on the phone last night babbled on about them “probably not wanting to treat me too early” as a rationale for why my last two GP visits have been a total waste of my time. It seems to be so hard to get an early “win”! And you and your mum both started so young? Both my own and my mum’s conditions didn’t really come on until our late 50’s. Double whammy with the weight thing: of course, everyone blames the menopause!
Great post - a sense of humour is essential. I could go to the GP with a broken leg and he would still blame the menopause! Hashimoto's, Menopausal, sick parents and stroppy kids - have to laugh or the stress would finish me off. Good luck and don't take any you know what!
There is a link to general hormones and I always had issues, as did my Mum so that might have been part of the reason for it appearing so early and why for some women it doesn't appear until menopause which is where I am at present - I know that I have had issues just now and dose has been upped as a result. My brother was 45. Genetics suck!
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both from your original tests and the next batch.
I’m new to the group
Why do doctors insist on fighting patients when they know that they are wrong?
My story so far, New-ish and seeking further advice
