Looking for Advice on results and bad doctors. - Thyroid UK

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Looking for Advice on results and bad doctors.

SuccubusVi profile image
12 Replies

According to my doctors, since I hit puberty I've had borderline hypothyroidism then I don't.. Then I do.. Then I don't.

I actually asked for the manager to print my latest blood results. And whilst they seem in range, I think.. I would just like someone who has hypothyroidism to look over them for me.

My TSH was 3.25 And my T4 was 13.5

Another two pointers on my results were Vitamin D levels were 13 and my C reactive protein was 13.

These are my normal symptoms: imgur.com/a/R4Rbh

I just feel like my doctors don't really care.. It's just that feeling when you feel like something is up with you.. But your not quite sure what it is.

Thank you..

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SuccubusVi
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12 Replies
bluebug profile image
bluebug

I hope you are on vitamin D supplements on prescription if not go back to the GP surgery and politely enquire why. If you get no joy post here as there are people you can complain to.

Some of your symptoms will be due to very low levels of vitamin D and some GPs still think vitamin D testing is a fad when in fact it is partly due to other parts of their profession telling people to put on sun screen at all times.

If you have vitamin B12, ferritin and folate results as well with ranges please post them as they are likely not to be optimal.

In regards to your hypothyroidism if you are within the lab range when tested then NHS doctors will not consider you as having hypothyroidism. You need to have your tests done first thing in the morning before 9am if possible and fasting overnight for at least 12 hours to ensure your TSH is at the highest level.

Your TSH level needs to be around 10 before they consider treating you on the NHS. This is because you are entitled to free prescriptions and everything on the NHS is geared to save money.

SuccubusVi profile image
SuccubusVi in reply to bluebug

See the doctors didn't tell me I had to have it early.. I had to fast for a glucose test in the same test, but they booked me in for 2:00..

Has for the other results, such as b12 and ferritin.. I didn't get tested for them, but I know my b12 was low the last time they looked at that.

As for vitamin D levels, I'm on 40000 IU a week, but like always my level will crash once I've finished the course.

bluebug profile image
bluebug in reply to SuccubusVi

That is damn mean. I know a few people who have had to have glucose tests and they make sure they have them first thing in the morning.

in the future if you ever have a fasting test refused to have it in the afternoon even if you have to wait two months to have the test done. Tell them you feel faint if you don't eat due to having to work etc. Also if you are in doubt do all blood tests fasting.

Also you aren't taking enough vitamin D for a level that low. Where I am the treatment is 60,000IU for 12 weeks followed by 1,000-2,000IU as maintenance for the rest of your life. Then you have another test at 6 months.

After that you are suppose to be tested yearly but you have to pay for your own tests as the NHS will only do them again if you have symptoms. If you go on to the thyroidUK.org.uk and look under testing you will see links to City Assays who do a vitamin D test for under £30.

However if you need everything tested then Blue Horizon do a plus 11 pin prick test which includes vitamin D.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to SuccubusVi

You might be suffering with anaemia as well. Although I am long term Hypothyroid, I was still getting tired and it transpired that not only did I have pernicious anaemia but B12 deficiency as well. I agree, you need to have your tests done early in the day. I never take my medication of any description before a test (Although they advise you to) but it does give a false reading if you do take it. I never know how to read the results, but it sounds to me that at the very least, they should retest you and check your feretin levels. The Vitamin D supplement is needed too as it helps with the bone density especially when older and helps with keeping your bones healthy. My sister was recently tested for feretin levels and they told me (I am her carer) that they were "normal" but when I challenged them, they confirmed it was on the "low side of normal", she has been on iron supplements ever since and it has helped a lot. Is there any possibility that you can get a second opinion from another GP or another practice?? Please keep in touch and let us how you get on. :) Another thing for future reference, if the results come back and you need medication, especially iron, never take it with other medication, leave it four hours between as it will not let the other medication absorb properly and same applies to the vitamin D supplements. Take care :)

greygoose profile image
greygoose

Well, the brutal truth is, they don't care. They have a job to do, and as they see it, their job is to do blood tests, look at the computer, and prescribe a drug. When you are hypo, you're difficult to fit into that pattern. And Dr House, they ain't!

So, this on and off hypo... Have you had your antibodies tested? Because it would seem to me that high antibodies is the possible explanation for that. And, if they knew anything about the subject, they would test those first.

Your TSH is too high. Once it hits 3, you are hypo. But doctors don't know that. And, even without the ranges (please post ranges in future. :) ) the FT4 looks low. Your FT3, the most important number, will probably be low, too.

Are they at least treating your low vit D? Because that is vital. If so, what are they giving you, and how much?

Have you had your vit B12, folate and ferritin tested, too? Because they are possibly also low, and adding to your symptoms.

So, it looks like some private tests are in order - and investment in your future health! You need :

TSH

FT4

FT3

TPOab

TgAB

vit d

vit B12

folate

ferritin

With those, you will have a better idea what's going on. Just post them on here, and let people have a look, and I'm sure they'll be able to help you. :)

SuccubusVi profile image
SuccubusVi in reply to greygoose

I'm not quite sure if I've had my antibodies checked for the on off part.. Again, my doctors are useless..

The Vit D, I'm on 40000 IU a week, but I know it will crash as it always does when I finish my course.

Annoying I only have my TSH, t4 and t3 tested.

Which are:

TSH: 3.25

T4: 13.5

T3: 4.4

I'm apart of Benenden health insurance, should I get them to look into it?

bluebug profile image
bluebug in reply to SuccubusVi

Check you policy details.

Some don't pay for private testing and/or on going conditions.

Others require you to get a referral from a GP and most GPs won't refer you if they have done the test themselves in case you can prove they are incompetent.

SuccubusVi profile image
SuccubusVi in reply to bluebug

Mines a refer from GP one.

But if they refuse it, I could possibly talk to the manager as I'm friends with him, and see what he can do on my behalf.

Barrister profile image
Barrister in reply to SuccubusVi

Just tell your GP that you have private healthcare and that you would like to be referred because you feel unwell and need to get to the bottom of it. Whenever I go to see my GP now, I tell them exactly what I want and won't leave until they agree! Clemmie

SuccubusVi profile image
SuccubusVi in reply to greygoose

Oh, the t4 range on this sheet is: 12.00 - 22pmol/L

greygoose profile image
greygoose in reply to SuccubusVi

Well, both your Frees are pretty low, and your TSH is too high. Are you on any thyroid hormone replacement at the moment? You really ought to get those other tests done, so l hope you can get them on your private insurance.

As for your vit D, you could buy your own, and take a permanent maintenance dose, as you doctors don't seem to understand vit D.

SlowDragon profile image
SlowDragonAdministrator

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

Blue Horizon - thyroid plus eleven test will check all these

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

If you find you do have high antibodies in either or both ( called TPO, or TG antibodies) then is means your thyroid is autoimmune - called Hashimoto's

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Supplementing selenium can help too

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