Long term under active thyroid sufferer needs advice on results

[Scoobylou]

So, after many years of battling the GP about my thyroid the final straw came recently when I was told I would need to reduce my levothyroxine to 100mcg from 125mcg as my readings were way too high and I was at risk of osteoarthritis. I explained the reason I wanted the test was because my symptoms were getting worse. Desperate tiredness, weight gain and general aching in my muscles along with being cold. I was told that there was nothing they could do! To say I'm desperate is an understatement. I have gradually gained weight since I was diagnosed some years ago and now weigh 3 stone heavier than my pre thyroid weight. I have been to a nutritionist who has seen all my diet sheets and is concerned that my thyroid is being under treated. I am now struggling to even work so any help would be appreciated.

I requested a copy of all my bloods in the hope that someone out there can shed some light on my results. I would be grateful for any response that can help. I will just copy what is printed in the hope it makes some sense.

SERUM T4 LEVEL XaERr 14pmol/L (9.0-20.0)

SERUM TSH LEVEL XaELV <0.01mU/L (0.35-4.94)

SERUM FREE TRIIODOTHYRONINE LEVEL XaERq 4.4pmol/L (2.4-5.7)

25-hydroxyvitamin D3 level XaXHs 22.6nmol/L

25-hydroxyvitamin D2 level 11.5nmol/L

Combined total D2 and D3 level 34.1nmol/L (50.0-220.0)

I am currently taking an over the counter magnesium, vitamin D, and a multi B supplement. I am considering seeing Dr Bernard Willis so if you have been to see him and have improved I would love to hear from you.

Thank you for taking the time to read my post.

[Jazzw]

It's astonishing that they linked risk of osteoporosis to your low TSH (which means nothing by the way, given your FT3 and FT4 could both be higher) when your Vit D is in your boots! Didn't they say anything about that???

How much Vit D are you currently taking?

For what it's worth, you probably need a raise in levo dose. But getting your Vit D up would almost certainly help you feel better. Do you have a ferritin or Vit B12 blood result?

[Scoobylou in reply to Jazzw]

Thank you for your reply. I currently take an over the counter vitamin D the dose is 25ug. They said that was enough. I don't have any other results. To be honest I don't know where to start. Not sure if that's down to the brain fog that makes everything hard work or the minefield of tests that are available.

[Scoobylou in reply to Jazzw]

Ok so I have gone back through the bloods, apologies they really do not make sense to me and I have found a haematocrit test. At 0.42L/L (0.3-0.5). Would that be the same as ferritin?

[jimh111]

The TSH is inconsistent with your fT3, fT4. Possibly some sort of condition such as depression or previously having an overactive thyroid has down-regulated your pituitary. Another possibility is interference with the TSH assay. I believe vit B7 (biotin) can do this (I know nothing about it!), is this in your multi B supplement? Perhaps drop the B supplement for a month or so and ask for another blood test.

[Jazzw in reply to jimh111]

Unless...

What's your thyroid history, Scoobs? Did you have an overactive thyroid at some point - Graves perhaps? Do you still have a thyroid?

[Scoobylou in reply to Jazzw]

No, never been overactive, always been on the underactive side.

[Scoobylou in reply to Jazzw]

Just a thought as I didn't add it into main body of text. These results are before I was dropped to 100mcg of levothyroxine. The GP won't test for 6 months.

[Scoobylou in reply to jimh111]

Thank you for your response, I have never been over active and have not had depression although I have low moods but think that's just down to frustration in not getting listened to by the GP. I have only recently started the B vitamins thinking they may help. I have just checked my label and it contains 50ug per tablet and they are one a day.

[Scoobylou in reply to jimh111]

Apologies that should have read 50ug of biotin

[Anthea55 in reply to Scoobylou]

Recent discussion on here about biotin interfering with test results. Here's the link

healthunlocked.com/thyroidu...

May be sense to arrange a new test and to give up the supplement containing biotin for a few days before the test.

[Scoobylou in reply to Anthea55]

Hi thanks for that. I will be leaving out my vitamin B until I can get to see someone and have more tests. However I was not taking the vitamin b at the time of these tests.

[Anthea55 in reply to Scoobylou]

Vitamin B is good - only leave it out for a few days before the test, I think.

[jimh111]

Do you have some older blood test results for TSH and prefereably fT3, fT4? We could compare and see if the TSH is now behaving differently.

[Scoobylou in reply to jimh111]

Just as an afterthought. My GP reduced my thyroxine from 125 to 100mcg on the basis of these results.

[Scoobylou]

Sadly not, you would not believe how long it's taken to get the GP to release these I had these done at the beginning of March. I got them today. My nutritionist said a reverse T3 test would be useful. Which of course I would have to get done privately. What do you think would be a good set of tests to have done?

[jimh111]

A reverse T3 test is expensive and not much use. You can't quantify the effects of rT3, just note if it is highh or low. In your case it is most likely low because your fT4 is lowish. You are entitled to a copy of your medical records. If you have had previous thyroid tests I'd suggest you ask nicely for them, but if they refuse be assertive and insist. Try asking the receptionist rather than waiting for a doctor's appointment.

I assume you are on a moderate diet. If you are on a vert strict diet, very low calorie it can reduce your TSH.

[Marz]

nhs.uk/chq/pages/1309.aspx?...

You are legally entitled to copies of your results - they are after all YOUR blood results. No reason need be given - but you could be extra polite should they ask - and say you need them for your own records. Job Done I live in Crete and we keep all our own records ..... helps you to take control of your own health too.

[Scoobylou]

Will be asking for them today. Will try the receptionist rather than the GP as suggested.

Thanks for the tip on T3. No point in wasting money. Which tests would you reccomend?

[SlowDragon Ambassador]

You can register to get access to your medical records online since this April. All surgerys must comply ASAP (when I asked for access in Mid April I was first patient to do so in our large group practice of about 10 GP's, so I don't think they have been inundated with requests!)

This doesn't give full access, to all notes or letters from consultants (yet at least, it may in future) but it does give access to excellent record of all blood tests (and ranges)

You need to physically go to your surgery with photo ID, fill in a form requesting access and in a few days the surgery write or email you log in details to access your own health records.

I recommend it, saves ringing up to be told by receptionist .....blood test is "normal" Agggggh 😟

[Clutter in reply to SlowDragon]

Slowdragon,

I registered with my practice for online access a year or more ago and although I have online access to booking appts and ordering repeat prescriptions I still don't have access to medical records. I think practices have until April 2018 to facilitate access to medical records.

[SlowDragon Ambassador]

I also thought access to test results etc was not obligatory until 2018....but maybe not ?

It would seem that everyone should (in theory) have access now

england.nhs.uk/ourwork/pe/p...

In comments below found this enquiry and the interesting reply ...

"I have formally requested detailed coded access from my surgery. I have provided the necessary ID and explained the difference between the SCR info and detailed coded information. I have reminded them of the 31st March deadline.

I still only have access to SCR; no test results or diagnoses. I suspect the practice is refusing to comply with the contractual requirements.

If, despite repeated requests and reminders, the practice do not provide detailed access by April 1st, what is my recourse?

Can I report them for noncompliance? To whom? How can the contractual obligations be enforced? What steps and procedures are in place to ensure full compliance?

I shouldn’t have to battle so hard simply to have meaningful access to my own record. Practices need to be reminded of patients’ rights and their obligations.

NHS England says:

9 March, 2016 at 4:38 pm

Thank you for your enquiry. Your surgery should be able to offer you access to your detailed records by the 31st of March 2016. Please send us an e-mail at [e-mail] with more information about your surgery and we will further look into this.

Kind regards,

Patient Online team