Confused Newbie: Hello I am a recently diagnosed... - Thyroid UK

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Confused Newbie

janey1234 profile image
19 Replies

Hello

I am a recently diagnosed 49 yr old Hypo' and would be grateful for any feedback on my blood test results which I've finally managed to get hold of today. A bit of history first....

Feb 2016, saw Doc with a selection of symptoms that had come on suddenly over a 4 week+ period, inc bursting into tears, weekly weight gain, overwhelming tiredness and what can only be described as 'hypoglycemic symptoms'. Blood & urine samples taken...

FULL BLOOD COUNT all came back normal

FERRITIN normal

LIVER FUNCTION all normal except Serum Total Bilirubin 23 umol/L (0.0-20.0)

THYROID FUNCTION Serum TSH 16.87mU/L (0.35-5.5), Serum Free T4 11.1 pmol/L(10.0-19.8)

UREA & ELECTROLYTES all normal

ESR Erythrocyte Sedimentation Rate 21mm (3.0-9.0)

FASTING GLUCOSE normal

At this stage I was told I was borderline underactive thyroid, had increased antibodies and to come back 1 month later for a retest.

March 2016

FULL BLOOD COUNT all normal

ESR Erythrocyte Sedimentation Rate 13mm (3.0-9.0)

THYROID FUNCTION Serum TSH level 17.79 mU/L (0.35-5.5), Free T4 8.6 (10.0-19.8)

Doc prescribes 25mg of Levothyroxine & tells me my cholesterol is too high (5.6). When I question if that could be related to the underactive thyrpod diagnosis, Doc says 'No' and tells me to come back again in 3 months for another retest.

JUNE 2016

THYROID FUNCTION TEST Serum TSH 14.72 mU/L (0.35-5.5), Free T4 9.5 (10.0-19.8)

Cholesterol 5.9

Doc now prescribes 75mg of Levo' and given dietry leaflet on how to reduce my cholesterol. I have to retested again in 2-3 months.

So, before finding this amazing forum I have been trying to educate myself on being a hypo'. I have found a checklist of symptoms, been thru' them with the family and concluded that maybe I have been fobbed off over the years at the docs with most things either relating to my age, a virus or just one of those things.

My acute tiredness has ceased, I'm not bursting into tears but I still can't drop any weight despite being a full-time very active gardener who eats healthily. I've always put my aches & pains down to my job and for years I've been more than aware of my distinct lack of eyebrows.

I'm OK, at least I think I am (not sure what normal is anymore ☺) but I would be grateful for any feedback, advice, etc on what I've written. Just an additional note, I was never told NOT to take my morning tablets before blood tests so I don't know if that has a bearing on my results. However, I was told not eat or drink ANYTHING before a Fasting Test, which explains why I look like a human pin cushion where apparently I am dehydrated at blood test time.

Thank you for your time.

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19 Replies
janey1234 profile image
janey1234

...sorry, just to add on. The Hypoglycemic-like symptoms, I believe, are a separate issue now.

Ruthi profile image
Ruthi

IMHO a TSH of nearly 18 is nowhere near borderline. Even the widest ranges only go up to 10, and optimal is 1.0. You don't have to be a mathematician to see that 18 is appalling! I was so very ill when mine was 3.6!!

Once you are optimally medicated your cholesterol should go down naturally, although it may take a while. Cholesterol is a precursor to thyroid hormone, and when you are hypo cholesterol rises to make sure there is plenty of raw material to make the hormone from. Don't whatever you do accept statins. They are rapidly falling into disrepute, but many doctors have not yet caught up with the latest information - and the drug companies have a vested interest in keeping them uninformed.

And also, once optimally medicated you should find that dieting works. A few lucky people lose weight without dieting, but I think most of us have to make an effort. However there is no point in trying until you are optimal. Its worth testing your vitamins D and B12, and folate - and ask for your actual ferritin result. Its another one where 'normal' and 'optimal' are different things.

Raised cholesterol from dietary sources is linked more to cereal grain consumption than it is to fat consumption (another bit of news for the docs!) so if you decide to diet, a low carb, grain free diet will kill two birds with one stone. If you want I'll write you an essay on why that is so much better all round than a low fat or low calorie diet.

Don't take you pills before a blood test. Try to get it booked in as early in the morning as you can (TSH is at its highest early in the day). You can drink as much water as you like. Keep yourself warm too, to help the veins dilate.

And take your medication every day at least an hour before, and/or three hours after food, milk or caffeine. I take mine on waking, because its easier for me to be sure there's an hour's gap in the morning. Taking medication on an empty stomach not only improves absorption, but helps metabolisation.

janey1234 profile image
janey1234 in reply to Ruthi

Thank you for your reply. I think a leaflet on high cholesterol is probably all the help I'm going to be offered in that department ☺. For now I am ok with the levels having read into research from Australia & Norway on the subject

Marz profile image
Marz in reply to janey1234

....check out drmalcolmkendrick.org

He's your man when it comes to cholesterol and statins :-)

Also Zoe Harcombe ....

EleanorM-G profile image
EleanorM-G in reply to Ruthi

Or read the book "Grain Brian" to save Ruthie the trouble!

Ruthi profile image
Ruthi in reply to EleanorM-G

Which is, of course, where I got a lot of my information. That and a piece I cannot find now, that showed that all animals fed on grain instead of their more 'natural' diet build up cholesterol. Free range, grass fed beef is NOT high in cholesterol, only the animals fed on grain and cattle nuggets!

EleanorM-G profile image
EleanorM-G in reply to Ruthi

It's a great book. Everyone on here needs to read it!

bluebug profile image
bluebug

You actually need the numbers and ranges of every single one of your tests. "Normal" is an opinion and means nothing.

For example if you have a ferritin level of 10 and the range is 6-200 your result will be "normal" according to most NHS doctors but to my NHS GP, WHO guidelines, sports scientists and trichologists you would be deficient in iron. They wouldn't be surprised that you feel extremely tired and have other symptoms of iron deficiency. A level of 30 would be fine for my NHS GP, WHO guidelines and some sports scientists but other sports scientists and trichologists would still consider you as iron deficient.

I strongly suggest you get the results for your ferritin, folate, vitamin B12 and vitamin D and confirm they are optimal not just "normal" or "adequate". If not then you will need to buy supplements and self supplement - though get some advice first. In addition be aware if you are on vitamin D supplements your cholesterol will actually increase.

Also ignore total cholesterol levels. There is lots of evidence around and some kind science/medical researchers from around the world have even posted and explained their research online that either:

a. Total cholesterol is meaningless as the ratio between LDL and HDL is important, or,

b. All cholesterol figures are meaningless especially as people with middle range levels are the ones who frequently have heart attacks and strokes. Instead you need to concentrate on your liver enzyme tests which should be near the lower end of the range. (Incidentally grain based diets are linked to higher liver enzyme levels.)

Regardless there is information on the main thyroidUK.org.uk site which you can read including the link between thyroid disorders and cardiovascular disease. You can also print it out and take relevant sections to your GP as Thyroid UK is a recognised charity on NHS Choices. Remember GPs are generalists and if you can give them well researched information some are open to learning things.

janey1234 profile image
janey1234 in reply to bluebug

I do have all of the blood results in detail, just assumed that 'normal' meant ok....but clearly not. If I can copy them onto this post, would you mind looking at them for me? Thank you too for your reply .

bluebug profile image
bluebug in reply to janey1234

Yep.

janey1234 profile image
janey1234 in reply to bluebug

Ok...will do tomorrow, thank you.

Marz profile image
Marz in reply to janey1234

janey1234 - normal is an opinion and not a result. Docs think if you are in range all is well - it is where you are in the range that matters :-)

EleanorM-G profile image
EleanorM-G in reply to janey1234

Put your actually results & the ranges into a new post/thread, as then more people will see it & you'll get lots of people helping you.

janey1234 profile image
janey1234 in reply to EleanorM-G

Will do :-)

greygoose profile image
greygoose

Hi janey, welcome to the forum.

OK, well, as you've probably gathered by now, doctors know very, very little about thyroid or hormones in general. Or about nutrition, come to that. So, yes, you probably have been fobbed off for years - most of us have!

Your blood test results... just putting 'normal', is not acceptable! So, don't accept it. Insist on having the actual numbers - with the ranges. There's no such thing as 'normal', because we're all so different. And what doctors mean by 'normal' is 'in range'. But that's not at all the same thing as 'optimal', which is what we want! It's very important to know the actual number for your ferritin. And, while we're on the subject, you also need to know the levels of your vit D, vit B12 and folate. So, ask for them to be tested, too.

Secondly, your cholesterol is elevated because you are hypo. However, it is of absolutely no importance, don't even bother to try and lower it, it will go down as your T3 comes up. Actually, you probably won't manage to lower it with diet. Cholesterol is made in the liver. And it's made in the liver because your body needs it. It is an essential nutrient, and will not give you a heart attack! It doesn't matter what you eat because the more cholesterol you ingest, the less your liver will make. But the less you ingest, the more your liver will make, so that there is a constant supply of cholesterol to the parts of the body that need it - like the brain! However, when our T3 is low - and with a TSH like that, yours is going to be very low - our body cannot synthesise the cholesterol the way it should, and it builds up in our blood. But, it doesn't matter. Whatever you do, don't let him prescribe statins!

Your doctor is obviously a bit of a loony, though. Fancy telling you not to drink before a blood test! lol However, we usually advise people not to eat before a blood test because TSH drops after eating, and most people need their TSH result to be as high as possible, so as not to get a reduction in dose! What I would say is, don't take your levo before the test - leave 24 hours between your last dose and the test - and try to always have your test at the same time of day - early morning. Do not let your doctor spring a surprise test on you, mid-afternoon, when you've taken your dose that day, and just had lunch! The results will be totally out of sync with the one before, and you will probably be told you're now 'cured'!

janey1234 profile image
janey1234 in reply to greygoose

All of the docs at our practice are 'loonies', I once had a spate of severe headaches, so bad that my husband had to drive & walk me into the doctors. I was given a box of condoms and told to have sex more regularly and my daughter was told to wash with washing up detergent to help with her dry, cracked & bleeding hands.

I digress.... I will try & photocopy my actual results on here and will def' ask for the other tests next time.

Shall I post results on this thread?

Thank you for your help.

greygoose profile image
greygoose in reply to janey1234

No, start a new thread with your results as this one will be way down the list, by now, and not many people will read it. You could just type them in. It's often difficult to see a photo of them.

SlowDragon profile image
SlowDragonAdministrator

Suggest you post test results on new thread tomorrow 😃

janey1234 profile image
janey1234 in reply to SlowDragon

Okey doke, will do

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