Still can't get diagnosed but extra tests being carried out

[Toria_Star]

Hi again everyone,

Happy snow day! I hope you are all safe and warm inside.

I headed back to the doctor on Monday (different doctor, same practice) with my mum in tow to back me up (feels great having to do that when you are in your 30's)! I told the doctor I believe my results show I have subclinical hypothyroidism caused by Hashimoto's and I was back to ask for a trial of Levo.

She looked through my results and said TSH was only a tiny bit above range so nothing to worry about and it seemed like she reckoned I didn't have a thyroid problem. My results had been forwarded to an endo for comment and although I couldn't see all that was written, it did mention 'negative TGO antibodies' but I couldn't see anything about the TgAbs (which are high above range). The endo response was also basically do nothing but re-test later.

I did manage to discuss a lot of symptoms and how long I've been feeling them etc but was fairly insistent with her that I feel it's a thyroid problem (certainly not saying it's JUST that). The doctor basically dismissed it and said there was a chance I had just clung on to something that seemed to fit and was hoping that a pill would sort my life. Being someone that has avoided taking medication in the past, I don't really think that's the case.

Anyway, the doctor said she will run a large panel of tests to see if anything else is showing up but did mention that she sees a lot of people with similar symptoms and that it might be something else. My mum questioned what she thought was a possibility and the answer was....you've probably guessed it....fibromyalgia.

So, I am keen to go back to the practice and get my bloods taken (I'll get a copy of results before I go back to the doctor if at all possible) but if they don't find anything else (even if they do) and are still dismissing thyroid then am I right in thinking it's time to move practice?

Questions:

I am subclinical hypo with TSH above range and T4 low normal range and Hashimoto's with only TgAb positive...correct?

If doctor still insists it isn't thyroid do you think I'd have any luck asking to be sent for an ultrasound? Would it show anything even if I can't feel any nodules etc?

Does anyone know any good GP's in Glasgow that have an understanding of Thyroid?

Would going private to someone like Dr Toft get me suitably diagnosed but if so would I have to buy Levo privately?

My blood test is next Thursday 8.30am (fasting). Currently taking ferrous fumarate, 10,000IU Vit D, Vit K2-MK7, B-complex, B12 and was about to add magnesium and selenium once they arrive. I read that for a more accurate iron panel (hoping she is running this) then stop taking iron about 5 days before. Should I be stopping all these 5 days before to get a more accurate result?

Thanks in advance!

[SeasideSusie Remembering]

If your B. Complex contains Biotin (B7) leave that off for a few days as well because if biotin is used in the testing it will skew results.

[wellness1 in reply to SeasideSusie]

Are you saying biotin would affect an iron panel too? Or just the thyroid results?

[SeasideSusie Remembering in reply to wellness1]

The article I saw said that biotin 'may affect some lab results'. It mentions that the research covers hormone tests but because biotin is used in so many immunoassay they say it could interfere with others. To be on the safe side it's best to assume that any test result could be affected.

[wellness1 in reply to SeasideSusie]

Cheers, SeasideSusie .

[Toria_Star in reply to SeasideSusie]

Thanks SeasideSusie I'll make sure to stop the B-Complex before going too.

[shaws]

There was a wonderful doctor in Glasgow but, sadly for his patients, he died suddenly. He also attended the Hearing along with Lorraine Cleaver who took her case to the Scottish Parliament. I suggest you Search Lorraine and I believe she also has a Facebook page.

She is another who had an awful story and so many on this forum could write a book about inefficient doctors who we depend upon but their training is so very, very poor regarding thyroid hormones and I suspect they haven't a clue what their function is in our body.

healthunlocked.com/search/l...

She is also a woman who wants to change things re dysfunctions of the thyroid gland.

[Toria_Star in reply to shaws]

Thank you shaws . I remember coming across her a few weeks ago but completely put it to the back of my mind. I'll have a good look into it all and might get in touch and see if she has any tips.

[Harko1980]

I am in exactly the same position as you & totally sympathise! I have felt rubbish for about 18 months now & with elevated TSH levels, but both GP & endo whilst acknowledging I am subclinical hypothyroid say that can’t possibly be what is causing my symptoms & have suggested no credible alternatives! After latest blood test am building up to GP appointment next week to ask for a trial of levothyroxine, suspect it will fall on deaf ears again though! Best of luck with it all

[Toria_Star in reply to Harko1980]

It's rubbish isn't it. I guess at least they are one step ahead and acknowledging that you are subclinical. I'm getting the whole "your thyroid isn't the problem" at the moment. Very frustrating.

I really hope you manage to get a trial of Levo. Have you're results changed much (assuming you have had a few tests)?

[shaws in reply to Harko1980]

First of all doctors know little about hypothyroidism as I believe they've all been told how 'easy' it is to diagnose and treat so do they know the symptoms - the answer is no.

All they know (but don't understand) is "look at TSH and if in range' patient doesn't have a problem - if he/she has a problem get the TSH into the range and stop increasing dose.

No wonder there's so many suffering members on this forum.

thyroiduk.org.uk/tuk/about_...

[trelemorele]

Changing surgery will not make much difference. You can sure go for it for but mark my words 🤔😒

You don't need doctor to diagnose you - your results are your diagnosis.

If you're antibodies are over - you're Hashi

If you're TSH is over you're hypothyroid - period.

I'd complain to NHS directly: your results are over/outside the range, you have multiple symptoms, your thyroid is packing up, your GP is refusing to treat, you will sue for further complications/wages loss etc.

In the meantime do all blood tests prescribed and waith for it to unravel.

Good luck 😉

[Toria_Star in reply to trelemorele]

That was my concern, whether I would be treated any differently. I'd love to find out exactly what training about thyroid is in the Med School curriculum so I can understand where they are coming from.

As much as I don't need a doctor for the diagnosis, that appointment actually left me wondering if I was right because she was so dismissive of the symptoms being thyroid related. It didn't help that my mum has huge respect for doctors so even she was off looking up fibromyalgia and even marfan syndrome after. She's not thrilled that I have suggested I will try to self medicate my thyroid if the doctor won't admit that's the problem.

Complaining to NHS may be an option (although I don't suppose it will change anything really) but I will wait for the rest of the blood work results and see if anything else shows up.

Thanks!

[trelemorele in reply to Toria_Star]

Don't treat complaining to NHS as an "option" only. It's your right.

It's your health and life vs ignorant man with prescribing hard drugs licence!

If everyone affected by poor treatment (who only moans on forums like this) complaint directly and in writing instead of or as well, we wouldn't need numerous, never ending, stupid petitions to overturn/stop this or that on NHS because NHS would have to do something about sheer amount of complaints in the 1st place.

I wish you well, but the times when doctors had medical knowledge are long gone.

You now deal with people who barely scrapped through the exams and as they seem to think more GPs are needed they push any tom Dick and Harry through meds school.

NHS don't need more GPs. They need smart, knowledgeable and well educated one instead.

[Toria_Star in reply to trelemorele]

Point taken! I'll get the pen and paper out!

[humanbean]

Would going private to someone like Dr Toft get me suitably diagnosed but if so would I have to buy Levo privately?

I don't know anything about Dr Toft and how he treats the thyroid. But it is possible to get Levo online without a prescription.

[Toria_Star in reply to humanbean]

Thanks, is it purchased from overseas? Are there people on here who could recommend where to get it? That may well be an option once the next bloods come back (if nothing else shows up)

[humanbean in reply to Toria_Star]

Yes, it is purchased from overseas.

It is illegal to sell prescription medicine without a prescription in the UK. So if the person you are buying from is breaking the law before you even buy, then it might not be a good idea to buy from them because they have already shown they are not law-abiding.

It is legal to buy prescription medicines from abroad without a prescription and import them into the UK for your own use or for the use of your household ("household" is the legal word used).

Obviously other countries have their own laws, so for example, you would have to supply a prescription to buy from Germany, but not from Mexico.

If you want a source for Levo then you should write a post asking for that in the title specifically. We aren't allowed to discuss sources of prescription meds without prescription on the public forum, you have to ask for people to send you a PM (private message). Your post will be closed to public replies.

[Toria_Star in reply to humanbean]

Thanks for the information humanbean . No doubt I'll be back in about a month, doing just that!