Private GP

[siannie]

So following my previous post after Christmas - I thought I'd give you an update .

Just a short reminder - pre Christmas I suddenly had the headache from hell. High temp and heart beat up. Ended up in hospital for 2 days . Initially thought bleed on the brain, ct scan fine, treated as viral meningitis then finally a kidney infection . Suffice to say they had no idea, however, the one thing they did was reduce my thyroxine from 125 to 75 as they said I was now over.

Following a visit to the gp the week after Christmas, she informed me yes it was a large drop but looks like I was over now and see how it goes . No further tests were done at all.

Through sheer frustration I decided to see a private GP , given I was still unwell tired etc . He arranged a the full works blood test, urine and stool . Some results came back the next day . He has referred me to see an endocrinologist in Nottingham as there is lots going on for further advice. He says I have hasimotos - never been told that before .

Is that different to underactive thyroid ?

My results as follows

TSH 0.03

free thyroxine 18

Free t3 3.7

Total t4 116

Thyroglobulin antibodies 374.3

Thyroxine peroxide antibodies 135.7

Vit d 36

Ferritin 220

Basically my cholesterol up too - blamed Xmas but I was actually ill and didn't eat

Triglycerides 2.5

Cholesterol 7.7

LDL 5.4

Non ldl 6.4

Any thoughts people.

[Hidden]

siannie the NHS only test for one type of antibodies but with your levels you're clearly Hashi. Some of us have found that the NHS don't use that terminology, for example an NHS Endo told me I had autoimmune thyroiditis.

Your FT3 is too low as is your vit D. Don't understand why your GP reduced your Thyroxine, it just proves that most GPs know diddly squat about the thyroid and how meds work.

Worth asking Louise for a copy of the member recommended Endo list, [e-mail]

[waveylines in reply to Hidden]

Sorry to hear about your hospital stay. Mustve been scary.

Your diagnosis of Hashimosis means yiur body is attacking your thyroid in the end this results in the thyroid failing and causes hypothyroidism....so you then need thyroid replacement. A feature of under treatment of hypothyroidism is raised cholesterol. With the correct dose and type of meds this should drop back down.

Its difficult to know why the hospital dropped your dose so much as it doesn't sound like they told you the actual results of their blood tests. I dont have much faith in doctors in hospitals knowing much about thyroid treatment. Your private blood tests which have been done am guessing only a month later after the lowering of your meds show your levels are too low now already. This leads me to think that the hospital probably only tests TSH and were trying to treat you by the TSH range -a very common mistake medics make!! They really should treat you according to your thyroid hormone levels (ft4 &ft3) & how you feel.

Can you pop the ranges on your blood test (numbers in the brackets next to each test) -labs vary in there ranges so would be helpful if you included them with your results. You should be able to ammend your post to include them. Thanks.

[shaws]

You have an Autoimmune Thyroid Disease called Hashimoto's and I'll give you a couple of links. You can help reduce antibodies by going gluten-free and quite a few members have found doing so beneficial.

The treatment is the same as for hypothyroidism and you will eventually become hypothyroid.

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

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

Doctors don't appear to know about treating patients and to reduce your dose by 50mcg and send you out without any advice - just in the guess that your 125mcg (medium dose) is the cause of your problems. Doses are usually adjusted by 25mcg.

It is helpful if you can give ranges when giving results of blood tests, the reason being labs differ and it makes it easier to comment. Your FT3 looks low.

Blood tests should be taken at the earliest possible, fasting (you can drink water). Also allow 24 hours gap between last dose and the test and take afterwards. This keeps the TSH at its highest as it drops throughout the day with the result doctors may adjust dose unnecessarily.

[NatChap]

How did you feel prior to that 'episode' before christmas when you were on the higher dose of thyroxine? I also saw an endo in Nottingham and he was supportive of me being on NDT but did say that if ever I wanted to come off it he would be willing to put me on a higher dose of levo even if that meant suppressing my tsh.

Your antibodies are clearly too high which means you have Hashimotos. Hashimotos is Auto-immune thyroiditis which results in an underactive thyroid..your body is attacking your thyroid gland basically. End result is still the same and is treated the same with thyroid replacement. A lot of people (myself included) go gluten free. This often helps reduce your antibodies and therefore attacks on your thyroid.

Get on the thyroid uk website and have a read up of Hashimotos before you see your endo. Other's may be able to help advise better on your other results..cholesterol etc.. although your vit d level is too low and could do with supplementing.

[siannie]

Thanks all for your comments .

I'm totally confused between hasimotos and underactive .

I've been treated for underactive for 12 years . Yet hasimotos causes underactive -

I saw the wonderful dr Skinner prior to his death and he changed my life doubling my mess from 200mgs to 200. This was gradually reduced by my gp over the next few years to 125mgs. Until Christmas when the hospital then reduced to 75mgs.

The private gp I saw says to remain on 75mgs until I see the endo guy as he will alter things . He was very informed and recommended the stop the thyroid madness book - he actually has a thyroid problem too !

I will put the ranges in if I can .

On another note prior to the hospital visit I had been feeling ok other than suddenly feeling cold then my hand trembling and of course then the almighty headache .

I was tested privately for food intolerances a few months ago and was gluten, dairy and several other intolerance !

I'm such a faddy eater too which doesn't help as all the stuff I like in intolerant too .

Ranges as follows

Ferritin

220 range 13-150

T4 116 range 59-154

TSH 0.03 range 0.27-4.2

Free thyroxine 18 range 12.0- 22.9

Free t3 3.7 range 3.1-6.8

Thyroglobulin 374.3 range 0-115

Thyroid perixidase antibodies 135.7 range 0-34

Hope that makes sense

[humanbean in reply to siannie]

I'm totally confused between hasimotos and underactive .

Hypothyroidism (underactive thyroid) has various possible causes. Some people never find out why they are hypothyroid.

Hashimoto's Thyroiditis is one of the causes of hypothyroidism.

Other causes could be iodine deficiency, damage or disease of the pituitary gland, or damage or disease of the hypothalamus. I think there are probably lots of other causes too.

In Western Europe, the US, and some other parts of the world, Hashi's is the cause of 90% of the cases of hypothyroidism. In other parts of the world, where iodine is deficient in the soil that food is grown in, the main cause of hypothyroidism is lack of iodine.

[Learner1]

Also, you will want to be on a gluten free diet, as gluten can make your antibodies worse.