New to this and need some advice.: I was... - Thyroid UK

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New to this and need some advice.

nibo profile image
nibo
9 Replies

I was diagnosed in January with Hypothyroidism. My results at the time were, TSH +100 and T4 1.5. My Cholesterol was 10.3. I was put on 100mcg of Levothyroxine and Statins for the Cholesterol.

By April I was told my results were normal. I didn't get a copy of the actual numbers.

I was having very painful legs and the G.P put up the Levothyroxine to 125mcg.

I have just had a second appointment with the Endocrinologist who, I must say was not very helpful. She told me the her targets were to see one new referral with one follow up appointment. I had a battery of tests and the pains I was having in my legs and back were probably Arthritis. I am 51. She has now referred me to a Rheumatologist.

My latest test results are; TSH 0.11. Free T3 6.4. Free T4 22.0. She advised drop the Levothyroxine to 100mcg.

I would like some advice please.

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nibo
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shaws profile image
shawsAdministrator

Your results were very similar to mine when first diagnosed. Within a few weeks of being on levo I was so stiff and could barely move and every muscle joint was painful.

Eventually, it was the levothyroxine which was causing me the pain and through Thyroiduk I became well when I discovered there was other than levothyroxine. Many people do o.k. on levo as long as they have enough of it to feel good.

Always have your blood tests for your thyroid gland first thing in the morning and do not take levo before it. Take it afterwards. If you take levo at night, miss this dose and take after blood test.

Always get copies of your blood tests for your own records, they must have the ranges as we cannot comment properly if they're not stated. If your GP hasn't tested your Vitamin B12, Vit D,iron, ferritin and folate ask for these to be done as we are usually deficient and we need good iron/ferritin levels for the T4 (levo) to convert to sufficient T3 ( which is the active hormone we need to function). Always take levo on an empty stomach with 1 glass of water. If you've eaten leave 2 hours either side of taking levo.

Don't drop anything. Doctors are completely unaware that one of the main symptoms of hypothyroidism is Higher Cholesterol. Before the blood tests came in all doctors were aware of the main clinical symptoms and medicated patients until symptoms went.

If we want to recover our health, we have to read and learn as much as possible and the Endo you saw was very unhelpful. Reducing doses of levo according to the TSH can have a bad effect on the patient's metabolism. Read first two questions on this link:-

web.archive.org/web/2010103...

I wouldn't drop your levo if you are still having aches/pains. In fact that is also a hypo symptom and statins may be having an effect in some way. If you are on an optimum of thyroid medication your cholesterol should reduce .

If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft of the British Thyroid Association wherein he says some of us need a suppressed TSH to feel well. Ignore his last ignorant paragraph.

shaws profile image
shawsAdministrator

An excerpt re statins:-

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

nhs.uk/Conditions/Cholester...

nibo profile image
nibo in reply toshaws

Thank you for your comments. I have not been taking Statins since April, my Cholesterol was falling and the Endo stopped them.

I am due for another blood test tomorrow. I did not know not to take the Levothyroxine before the test as I have one for all the other tests.

My Vitamin D was checked and it was very low. I have been on Vitamin D tabs and results are normal.

This is probably nothing to do with the Thyroid but I have some very strange dips and grooves in my skull. The G.P was puzzled and said it could have something to do with the Vitamin D but she would need to do some research as she had not come across any thing like it. She told me to show the Endocrinologist which I did but she refused to look. I don't know whether you have heard of this.

Angel_of_the_North profile image
Angel_of_the_North in reply tonibo

Vitamin D needs to be around 90-100 nmol.

Angel_of_the_North profile image
Angel_of_the_North

Painful muscles are a side effect of statins. How's your cholesterol now? high cholesterol is a symptom of hypo thyroid and should come down on its own when you are properly medicated. I'd discuss dropping the statins. Also how's your vitamin D?

nibo profile image
nibo

I have not been taking Statins since April. At the last test my Cholesterol was 6.1 so it is coming down. Vitamin D was 132 nmol/L.

Glynisrose profile image
Glynisrose

Cannot understand why any doctor prescribes statins to hypo patients - Oh yes I can, they get paid for prescribing them!! Statins are CONTRA indicated with hypothyroid.

And - bang! She's shifted you off her desk and on to the Rheumatologist's. Shameful. These days they'll call any pain in limbs 'arthritis'. It is the equivalent of deeming any infection they don't understand 'a virus'. Be aware that a side effect of statins can be painful, swollen legs/feet. Ask Louise Warville for her list of 'good' Endos and ask to be referred to one of them. Do not mince your words regarding the efficacy of the one you saw. They really shouldn't be allowed to get away with this!

Ansteynomad profile image
Ansteynomad

The NICE guidelines re statins state quite clearly that hypothyroidism should be 'adequately treated' before statins are even considered, because adequate treatment of hypothyroidism reduces cholesterol.

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