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Thyroid UK

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Peroxideblader profile image

Hello there..Sorry I'm not tech savvy enough to attach this new post to my old one from a month ago...I'll do a debrief because hopefully someone can attach it so I won't bore you all again.

just one last question please....my health over the last 6 years has continued on a downward spiral and from your wonderful advice on here and my own private thyroid tests and 2 nhs ones I finally got my gp to consider a diagnosis of secondary hypothyroidism or hypopitituarism as my tsh t3 t4 were all low ferritin and folate too....she spoke to an endocrinologist who said to re test in 6 weeks to see first..so I had them done this week and suddenly my t4 which has been below range twice before is now in range@@@ aarghhhhh. it's 8.5 to 26 and I've been 8 and 7.2 bit last time 10...my tsh has dropped again to 1.02 no t3 result...so guess what....as all my levels are in range albeit all 3 low pointing to a pitituary problem she said all looks good and she can't refer me to an endocrinologist as there's no issue now....this is literally the end...they already think I've got health anxiety and I'm making this illness up now they know as per my results..

she said if I must insist they'll retest me in 12 months......does anyone have any ideas now?? I've seen 5 different doctors now and they all say no thyroid issue..only me being mental and pre menopausal..😣😣😣

24 Replies

I get tested every year for my hypothyroidism and my purtuity gland I have adrenal fatigue as well or Addison’s.

That said In my testing phase I was getting tests done every 3-6 months.

My adrenal problems took 3 years to resolve but the t3 t4 issues were resolved quickly after diagnosis of low t4

I’m not familiar with your story but I’m assuming you have had full bloods t3 T3 tests as well as a short synathen test ? Or day curve done?

What was low ? And what symptoms are you still experiencing? I have low vit B 12 injections, vit d daily but I also had to go through a stage of testing my blood sugars. 5 times a day and blood pressure to see when I was experiencing problems

The doctors made me feel like I was making it up but I knew something wasn’t right I was craving salts and sugars. I remember one day I felt so bad I went in to Costa coffee and ate 5 cakes 🎂 just to get me feeling somewhere near normal !

Luckily I do t suffer with diabetes it seems quite the opposite let me know thanks russell

hi there...I've paid for private tests for thyroid including b12 ferritin and folate then vit d test..my vit d was good my ferritin low folate low and b12 so so at 212 I think last year.

the first private test 16 months ago showed below range t3 low t4 low tsh hence seeing my gp. there's 5 family members with hypothyroidism yet gp has continued to dismiss any thyroud issues. when nhs bloods done in March showed below range t3 they restated in June when my t3 was back in range just but my t4 was below range. still refused to acknowledge an issue so retested and because my t4 is now back in range they've closed my referral to an endocrinologist as all in range. they're dismissing all my symptoms and said it's nothing to do with my pitituary either..

they just seem determined to prove I'm making it all up

I hear you!! I'm So sorry you are going through this. It is such a common story, our test results showing up as "normal" when there is clearly something going on, and then the doctors saying it is all in our heads, just caused by anxiety. Ahhh! It drives me mad... it should be a crime to allow patients to continue suffering untreated and telling them it is just anxiety.

It took me my whole life to get diagnosed with hypothyroidism. I have had symptoms all my life, and I'm now 40. I only got diagnosed and grudgingly believed because my TSH Eventually slipped just outside of range. And then got told to wait until 3 months for a test to really prove it! I was so upset that still nothing was going to be done, no treatment or confirmation, that I tried harder to push for a diagnosis, knowing that finally I was right, what I had believed for years was true, I really did have hypothyroidism.

So I found yet another GP, who looked at my TSH levels Over The Years! Not just my present TSH. I had never thought to do this. You can do this yourself by getting a copy of your medical history if you don't have all the results yourself.

When this doctor looked at my TSH history he said there is obviously a problem, as even though my TSH was in range up until recently, it was very gradually going up, with every test, showing a clear deterioration in my thyroid health year after year, proving how I had been feeling.

So perhaps get a copy of your medical history and pick out all the tests that are relevant and list them and see what picture they show. Then take this list to either your current doctor or a different practice if you find a decent GP.

Of course the battle doesn't end there, I then faced argument about my meds dosage, and they won't agree I have Hashimoto's, etc, but I at least have this confirmation. And it has taught me one very big lesson, that I know myself best and I always have done.

Also it taught me that doctors shouldn't have all the power especially when they don't actually understand our illness!!! There are means of self testing through private labs like Blue Horizon and Genova. Me and many others would be lost without these self empowering sources!

I really hope this helps in some way.

Xx

Oh and I also recommend getting a Hair Analysis test! I had mine done after being on thyroid meds for a little while, as I wondered what was triggering my thyroid problem, and had concerns about mercury poisoning as I have had a lot of dental work. I'm so glad I did this!!! It was the best decision I ever made! As it showed me I have a very nasty heavy metal toxicity that has shocked me... not mercury. And after much reading, I have found this toxin could have caused my thyroid problems, or at least contributed to them.

I found that Trace Elements lab is the best for hair analysis as they don't wash / damage the hair during testing. There are companies that arrange the testing via this lab. I use Mineral State, because they have excellent detailed charts of your results. They also list things like whether your results indicate metabolism and adrenal issues xx

Hi does the lab advise how to deal with any issues found from the Hair analysis?

Hi Blondiejayjay

Mineral State have a nutritionist they consult who sends you a detailed write up with your chart, which shows what you can do to help issues that come up in your hair test. They recommend diet changes and supplements to best suit your overall picture. The most valuable bit I found was the chart, and notes. I have sought my own ways to treat the toxicity that was uncovered and I have had retests to check on my progress.

Hope this helps

thank you I'll look into this I had no idea

Maybe look into Izabella Wentz. She's written some amazing stuff about the thyroid xx

thank you it's exactly like you say they think I'm a hypochondriac and have anxiety...yes I do because I'm 50 and since the age of 44 I've been so ill u had to give up work and it's only got worse. everytime my levels go under range they say oh we'll repeat the tests in 3 months or whatever then when that has changed your be in range and another is then out of range they repeat the re testing..2 years of private and nhs and the pattern has been tsh getting lower and lower t4 low then under range then low..t3 under range then bottom of range...

they just keep moving the blood tests now 12 months wait to see..

I'm having heart tests soon as I'm having serious heart pains shoulder pains and I have angina already..so they just put my thyroud symptoms as stress heart issues and menopause I just give up!!

It's crazy and I'm so sorry they're treating you this way. I resorted to self medicating in the end last year... I got my diagnosis and was given thyroxine but I reacted to the UK tablets! I read that American tablets are better manufactured than UK ones so I ordered some online. My side effects from the UK ones vanished as soon as I stopped them. Once I had my own thyroxine I decided to stop fighting the doctors and self treat. No it's not ideal, but I feel I have no choice. Xx

Another option would be to go and see a homeopath! I have started homeopathy recently and it's really helped me

thank you..I think I need to trial my own like you said..my 2 cousins who both have hypothyroidism use ndt I'm told ( we don't speak sadly so I can't ask)...do you recommend ndt over thyroxine and I have used homeopathy these last 6 years when I lost my inability to get to sleep...how did they help you?? thank you x

Hi Peroxideblader, I tried a cheaper UK version of NDT called Metavive but I found the T3 content in it was way too high for me. It made me very wired! I then tried Synthroid (T4), and I stabilised on this for a bit, but after having tried Metavive I felt I was missing T3. I checked my blood test results and found my T3 was a bit low, and kept gradually going down, so I decided to buy some T3. I now take a very tiny amount of T3 twice a day, and a daily dose of T4. This helped sort my head out so I could do bits of paid work again, and start working on my root causes. T3 can be a bit of a minefield, but I was very very very gentle with it, and still am, and it's helped me. I'm still very exhausted but that seems to be part of my heavy metal toxicity. I'm a lot better than I was before having any thyroid medication.

My main concern with self treating for you would be your heart condition, and not having an experienced doctor to help keep everything in check together, but then Not treating your thyroid could be worsening your heart condition...

Oh fab you've tried homeopathy! Did it help re your sleep? Trouble sleeping can be connected to thyroid problems. So far homeopathy has helped with symptoms of my toxicity: Immediately on starting homeopathy my stomach stopped getting upset every day (which will help me absorb nutrients better), it's been a lot less acidic overall too. It's helped my head be a bit clearer and be less anxious, more motivated. It's helped my skin (I was getting very worsening dry skin, really quite bad and flaky). And it's helped with bony lumps I had appear on my hands a couple of years ago. These lumps made it Very painful for me to do anything with my hands, including chopping food and having a shower! The lumps are still there but the pain and stiffness has gone :D I'm looking forward to what else this can do for me.

I still take my thyroid meds, but work with homeopathy alongside them.

Xx

I know that trio only too well! I was fobbed off for decades despite a family history and obvious symptoms of hypothyrodism. You could always consider self medication given the poor support you have had from the medical profession. I take the view it’s my life and I’ve only got one so why not try and do some self improvement if no help is forthcoming from the expected channels. I am glad I took the law into my own hands I feel immeasurably better for it.

SlowDragon profile image
SlowDragonAdministrator

Here's your previous post with test results

healthunlocked.com/thyroidu...

Keep taking the vitamins so that levels improve and get full private testing of thyroid and vitamin levels in say a months time

thyroiduk.org.uk/tuk/testin...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

Have you tried strictly gluten free diet?

Something to consider too

Selenium supplements can help improve conversion of FT4 to FT3

hi I've used blue horizon for the last 2 tests but u may use them again in 6 months mid way between now and the next nhs one. I supplement iron magnesium b complex multi vitamins bit I don't take selenium I'll look into that..is there one you'd recommend..

That T4 range looks very wide, if I was being cynical I might suggest that it might be almost impossible to get a diagnosis unless you fall into the very extreme category of unbelievably under/over active.

If those ranges are based on a sample of the local population in your area I would assume they are including a large number of undiagnosed hypo/hyper thyroid people when the ranges are compiled.

I would get some private tests done and see how the results look, I have used both Medichecks and Blue horizon their range for T4 is usually 12-22 so your readings of 8,10 and 7.2 would all be below their range.

Good luck, it's terrible that we have to do so much for ourselves when really the doctors should be on our side helping us to get well.

hi there..I have used blue horizon twice now they showed my t3 below their range t4 right at the bottom and tsh almost bottom.

my nhs test I apologise their ranges are 8 to 18 so twice I was below this time at 10 so hence they say I've no issue as it's in range!!! unreal eh

helvella profile image
helvellaAdministrator

Which laboratory did your Free T4 test with the unusually wide range?

I'd like to check what information they have posted.

hi sorry I got the nhs range wrong it's t4 range is 8 to 18 so twice I've been under and bang on 8 this time it was 10 so according to them no further action as I'm back in range 😏

I'm sure somewhere on this group I've read about fluctuating thyroid levels, maybe someone can direct you on this. I can't remember the details unfortunately but there are others whose levels keep changing up and down. Maybe you are one of the ones who have to medicate based on how you Feel and not by the numbers? Or maybe there is something causing your levels to go up and down?

That's why the doctor said it's not a problem she said they all fluctuate throughout the day..but I always make sure my blood tests are taken the same time each time ....unless hormones affect the results as mine are all over with being in perimenopause

Hi

I've mentioned fluctuating Thyroid Function blood tests results in the past ( in the case of Hashimoto's).

Mine were Hypothyroid in 2008 but Euthyroid in 2010 even though not on Levothyroxine. Thyroid Antibodies not tested till 2011 (after Ultrasound scan which revealed Thyroiditis). I have Hashi's.

I've checked the posters results and the Antibodies (TPO and Tg ) are fine - well within range so no evidence of Hashimoto's Autoimmune Thyroiditis there . All I can think of is to ask for an Ultrasound scan of the Thyroid to see if any Thyroiditis.

I noticed the TSH is also low (as well as FT3 & FT4 ) but don't understand why. I'd be asking about this and for checks on Pituitary Gland.

I'd be seeking Adrenals tests, the u/s scan and the further testing by an Endocrinologist until diagnosed.

I’ll send you a pm

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