Still trying for a diagnosis... :/: Hi, could... - Thyroid UK

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Still trying for a diagnosis... :/

Tinks96 profile image
12 Replies

Hi, could anyone please help? I'm wondering there's anyone who knows of a GP/endocrinologist in the Ayrshire/ west of Scotland area please, who might be more sympathetic to test results showing normal and everything else pretty much pointing towards hypothyroidism?

Just had an appt with a local NHS specialist who won't diagnose or prescribe, and I've been suffering from hypothyroid symptoms for nearly 7 years now, and been signed off work for nearly 6 years. My test results from a couple of months ago show TSH as fairly low, with ft3 & ft4 both near the low end of the range.

As I've been off work so long I don't have instant funds for going private, though am wondering whether to try starting health insurance & trying to find the nearest more sympathetic GP/endo.

Other blood results up until now also apparently show as normal, as have previous full general blood tests...

Thank you so much :)

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Tinks96 profile image
Tinks96

The specialist I saw today did suggest that I try to find 'peer reviewed' evidence to support my comments about people going undiagnosed when their thyroid test results show normal. I had explained that I had heard of many people who eventually have gained a correct diagnosis, with normal test results, though only after years of ill health and much persistence with the NHS. I'm not sure I could find this evidence though!

I remember reading somewhere that TSH can show normal when ft3 & ft4 both appear low in the range, and that this can still sometimes point towards Central or secondary hypothyroidism. I did mention this as well, though again I have to provide peer reviewed evidence!

Also wondering whether to try and get a 24hr urine test done privately to see if that helps, though again it's more money I don't really have....

Thanks to anyone who may be reading this, it's all so disheartening and frustrating when the NHS don't seem to want to really look into cases where test results show as normal.

:)

BadHare profile image
BadHare

Hi Tinks,

I gave up with the endocrinologists, after three years of "normal", far too much bungling & loosing tests & hospital records. I've had 35 years of hypo symptoms, & a long tick list from The Pituitary Foundation, which were completely ignored by two departments, given that I have a pituitary adenoma. After a lot of reading & temperature testing, I ordered NDT.

I did the Barnes basal body temperature test for 3 months, which is supposed to be more reliable than blood tests. My temperature was usually 35.1 degrees, first thing in the morning, & is now half a degree higher. I don't feel constantly cold, & I can eat normally, without piling on weight.

I started very cautiously, in case I was wrong, & took a quarter, then half a grain for several weeks, before settling on one grain as the right dose for me. I ordered two grain pills to I could split them in half, so the cost of £66 for 100 pills, for 200 days, including import duty works out at about £10 a month.

Mel

Tinks96 profile image
Tinks96 in reply to BadHare

Hi Mel,

Bless you, thanks for your kind reply, and for letting me know your story. I was so upset yesterday at the appointment, it was like a breakdown emotionally, and I still felt really upset this morning. I think it's made even less substantial in their eyes as I don't appear to have any weight gain, though I've always tended to be underweight or at least be so thin regardless of what I eat. Plus, the different stomach problems I've been having have made me wonder whether that could also be related. And I've also found out there are others out there without the weight gain, who are hypothyroid as well.

With me not having funds really to go private and/or travel for help with it, I may end up doing what you've had to do, and I have been considering that option already. I'm sorry to hear that your own experience was also quite negative with respect to the NHS, and I'm so glad that you've managed to work through it by being proactive. I know how difficult it can be. I guess it just feels like a no win situation with the NHS where this sort of thing is concerned.

I have also been recording my basal temperature for the last 3 months roughly, along with my resting pulse rate, both upon waking, and they are both showing very low results consistently. I gave all this information to the doctors yesterday, however, they didn't pay any attention to it either.

I have had so much help and support throughout from my Reiki Master (I've been a Reiki student for a few years), and I feel I've been so lucky and fortunate in that respect. When I was really unaware of what was going on after constantly being told I was fine following blood tests, it was mainly through my Reiki Master, and also another lady who works with a different healing modality, that I began to be made aware that my health difficulties are linked to thyroid. Once I started looking into it myself, I knew it all made sense.

It was also highlighted to me that there is some kind of problem with me regarding my magnesium uptake, so I guess I could possibly look into getting some kind of transdermal magnesium supplement to see if that helps, alongside a suitable thyroid medication. Again, this may be related to my stomach problems, and also what's been going on with my thyroid.

I thank you so much again for your help and support, and I wish you all the very best, and a future filled with wonderful health and happiness :)

Best wishes,

Sharon

Teuchter profile image
Teuchter in reply to Tinks96

Hi Sharon. As far as I know, bathing in Epsom salts is a cheap way to boost magnesium levels. If you search the forum for "Epsom salts", there are lots of posts with a plenty of advice about it.

Good luck

Geoff

Tinks96 profile image
Tinks96 in reply to Teuchter

Thank you so much Geoff, that's a great help! My friend had mentioned about Epsom salts helping a while back, though I think now there's obviously a great benefit to be had through it I may have overlooked then.

Tinks96 profile image
Tinks96 in reply to Teuchter

Posted that last reply without finishing by mistake! :)

I appreciate all your help Geoff, thank you so much.

Best wishes

Sharon

BadHare profile image
BadHare in reply to Tinks96

You poor lamb!

I'm sorry you had that response too. It's really disheartening! It was mainly my anger that helped me find a solution, when I couldn't sleep with frustration. Knowing about my pituitary condition, & joining the Pituitary Foundation was a big help, as I'd been ignorant till then, though I've found Thyroid UK to have even more useful information that's helped me directly.

I found herbal medicine & Acupuncture a big help with symptoms, so can understand you feeling supported by alternative therapies, when we've been let down by our doctors.

My GP mentioned magnesium can cause digestive upsets, though I've never had a problem taking it as a supplement. I've used epsom salts in my baths for over 15 years, to help with pain issues, but I'm unsure how much magnesium is absorbed through the skin, & if it's enough without taking it orally as well. There are also skin sprays, & I may have a go at making my own for night time use.

I'm a big fan of clean food & eat probiotics every day, mainly kefir for it's B12 content. It definitely improved my digestive & overall wellbeing.

These articles are good, & might give you a few ideas that might help you feel better:

my.chriskresser.com/wp-cont...

my.chriskresser.com/wp-cont...

Thanks for your well wishes! Good luck, & keep me posted!

Mel

Tinks96 profile image
Tinks96 in reply to BadHare

Thank you so much Mel, all your help is so appreciated!

I'm feeling a little overwhelmed at the moment, after whats been happening recently, and with the symptoms, and just feeling a bit too tired to think much more on it just now! Though I am so encouraged by all the help and support through the kind replies I've received, it's very comforting.

I'll look into your advice soon, and hopefully will get moving forward with my health in a more positive way as a result too! I'll keep you posted as well, thank you kindly! I wish all the NHS GPs and thyroid specialists were more like yourself and the lovely people on here who have replied as well!

Thank you so much, & best wishes to you :)

Sharon

Tinks,

You can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.

There are both private and national health recommendations but you may need a referral from your GP, and be prepared to travel.

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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Tinks96 profile image
Tinks96 in reply to

Thank you so much for your kind response. I did email the lady you mention a couple of months ago, though with all the doctors seeming so far away from me, I guess I tried to find success locally. I think after all the upset of yesterday, im just at a stage at the moment where I need to take stock again and try to settle a bit before deciding what to do next. The difficulty with having to travel is that I've been on benefits so long, I don't have the funds to manage it. Though I'll have a think and see what feels best to do next.

Many thanks again

:)

greygoose profile image
greygoose

I Don't think you should waste your money on urine tests, not many doctors know how to interpret them - they have enough trouble with blood tests!

The problem is, they only really look at the TSH and ignore the rest. And if they are all somewhere in the range - even if very high or very low - then they think that's just fine. It might help if you posted your results on here to let people have a look, and they might be able to better advise you. :)

Tinks96 profile image
Tinks96

Thank you for all your help, that's really kind of you.

I feel you may be right about the urine test, I guess it could be more of an incline towards trying to get some proof, maybe more for myself, since the NHS so far have told me it's not thyroid after my blood tests.

My results last time were:

29/09/15

TSH - 1.77 (range: 0.3 - 6)

FT4 - 11.9 (range: 9 - 24)

Full blood count, liver, kidney, glucose - advised all okay.

08/10/15

FT3 - 4.1 (range: 3.5 - 6.5)

Vitamin D - advised okay.

I did manage to get more bloods taken yesterday, though I think these are a repeat of what's been done already, and may not change their opinion.

Thank you so much

:)

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