Dont know whats going on?: Ive been on levo for... - Thyroid UK

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Dont know whats going on?

Friend49 profile image
28 Replies

Ive been on levo for almost a year my hair is thin doesnt grow i got blurry vision higher blood pressure doctors got me on 25 mgs levo said my blood test are in range this is drivin me nuts cant get into a endo til pctobet so is it the med thats caising it or not enpugh med

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Friend49
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28 Replies
greygoose profile image
greygoose

Probably not enough levo. 25 mcg is a rediculous dose, and often makes people worse rather than better. The normal starter dose is 50 mcg, increased by 25 mcg every six weeks.

Tell your doctor you don't want 'in-range' results, you want optimal results, and it's very doubtful that yours are optimal on 25 mcg. Did you get a print-out of them? If so, post them here, with the ranges. If not, go and ask for a print-out at reception. If you are in the UK, it is your legal right to have a copy. :)

Friend49 profile image
Friend49 in reply togreygoose

This was mays report TSH 1.810 reg range .47-4.68utU/ML. T4 FREE 0.93 REF RANGE 0.78-2.19NG/DL

greygoose profile image
greygoose in reply toFriend49

Well, your TSH is still too high - it should be one or under when you are on thyroid hormone replacement. And your FT4 is too low - well under mid-range when it should be at least over mid-range. So, your FT3 is probably low, too. And it's low T3 that causes symptoms.

It's not good enough just to be 'in-range'. If you still have symptoms then your dose is too low - this is backed up by your results. You need an increase in dose. :)

Friend49 profile image
Friend49 in reply togreygoose

Thanks i know theres something wrong cant get into a endocrinologist til oct il cant wait that long so il find another one and my doctor is quiting end of july so i got to find another one of those too

greygoose profile image
greygoose in reply toFriend49

Oh dear. Can you not get your GP to increase your dose before he leaves?

Friend49 profile image
Friend49 in reply togreygoose

Ill try to what 50 i see her in 3 days

greygoose profile image
greygoose in reply toFriend49

Yes, 50 mcg. You can only increase by a maximum of 25 mcg every six weeks. :)

Friend49 profile image
Friend49 in reply togreygoose

Thanks il ask if not ill go to different doctor

greygoose profile image
greygoose in reply toFriend49

OK Good luck! :)

LAHs profile image
LAHs

Agree with greygoose. Increase your dose to 50 mcg Levo, that is still quite a wimpy dose and will do not harm. Do not mess around, increase the dose and TELL your doctor after your long waiting time rather than feel ill until you see her and then be told no. He/she will probably only measure and look at TSH anyway which will get you nowhere and keep you feeling ill for months if not years.

Friend49 profile image
Friend49 in reply toLAHs

Finally got back on here she wont increase my dose .Heres my test results from beginning to now. TSH 8.87 RANGE 0.46-4.68. FREE T40.74 RANGE 0.78-2.19. TSH2.810 RANGE 0.46-4.68. FREE T4 0.97 RANGE 0.78-219. MAY 2018 TSH 1.810 RANGE 0.46-4.68 FREE T4 0.93 RANGE 0.78-2.19. JUNE 2018 TSH 1.450 RANGE 0.46-4.68 FREE T4 0.96 RANGE 0.78-2.19 THE FIRST 2 WERE JULY 2017 AND JANUARY 2018 I DONT KNOW IF ITS THE LEVO THATS CAUSING MY SYMPTOMS CAUSE IM TIRED AND HAIRS THIN AND NO HAIR ON ARMS OR LEGS BLURRY VISION ACHEY LEGS. I DONT SEE AN ENDO UNTIL OCTOBER

LAHs profile image
LAHs in reply toFriend49

Hi Friend49, What is your Blood Pressure (BP)? That is probably what is scaring your doc off increasing your dose. As was said above, 50 mcgs is a wimpy dose but tell us your BP before upping your dose. The problem is that you can have high BP from being under medicated as well as over medicated - it's tricky. What was your BP before levo? You might have to dig through old records to find that info and tell us what it is now. Btw, if your doc will not cooperate with that simple request then that is a flag that s/he is not interested and doesn't give a damn and you should find another doc. I am asking this because I have the same problem, I would like to increase my dose of NDT but it sends my BP higher that I can stand (sends it over 150/60) and that is dangerous. So I put up with a tiny bit of inconvenience and am overall very well.

Friend49 profile image
Friend49 in reply toLAHs

Im on bp meds for years but last 2 months its been high so she upped my bp med it was like 193 over 100 last week after she upped it it was 130 over 70 im stressed about this thyroid matter i go to a new gp august 6 then to an endo october. Could the levo be makin it high?

Marz profile image
Marz in reply toFriend49

I have read that blood pressure is a symptom of something else going on in the body and not a condition in itself. Your low thyroid could be the cause. Doctors don't have the time or inclination to find the root cause of illness.

Have you had B12 tested ? - also Folate - Ferritin - VitD ? Magnesium Deficiency is very common with blood pressure issues ...

I do not think the levo is causing the rsised BP - but the other things I have mentioned could. Are you on any other meds ? Diet ? Gut issues ? Which supplements do you take ?

Friend49 profile image
Friend49 in reply toMarz

I take B12 shots once a month and vitamin d once aw week 50000 unit 03 -50 melexicom but im stopping that cause one of side effects said blurry vision and i've only been on that a month and a half biotin for my hair she said my iron was alright is that ferriton? The last 2 months is when my bp started getting higher and i take cholesterol med. But ive been worrying alot about this thyroid thing.

Marz profile image
Marz in reply toFriend49

It is advised to take a GOOD B Complex when having B12 injections to keep all the B's in balance and to give you B9/Folate. Folate works with B12 in the body in an important way. B12 injections can lower potassium - so eat a banana !

Your Ferritin ( stored iron ) needs to be around 70 for your thyroid hormones to work well.

I have read that it is better to take VitD on a daily basis - along with the important Magnesium and VitK2-MK7. VITD improves the uptake of calcium from foods and VitK2-MK7 directs calcium away from the arteries and into bones and teeth ☺

Statins could be the cause of your problems with blurry vision due to muscle weakness. Statins do not cause heart disease nor save lives and do not work for women. Raised cholesterol = LOW Thyroid. In days gone by and before statins people with raised cholesterol had their thyroids treated ... Cholesterol is made in the body and for good reason - it is needed for hormone production and the brain is over 25% cholesterol .... How long have you been on statins ?

Friend49 profile image
Friend49 in reply toMarz

20 or more years

Marz profile image
Marz in reply toFriend49

The heading to your post is - Don't know what is going on - well being on Statins for 20 years will not have been a good thing and is certainly part of what is going on. I wrote a long reply to you above and you did not comment - did any of my suggestions resonate with you ?

Have you read up on Statins and the harm they cause ? Would you like me to post some links ? I think it is time for some reading and taking charge of your health and not be so trusting of your Doctors - who seem to be keeping you unwell.

Friend49 profile image
Friend49 in reply toMarz

Im sorry ill read up on statins i didnt know you couldnt be on cholesterol med. That long its lipitor advorstatin . Everytime i have to change doctors the doctor just continues with the same medicine ive been on . Thank you. You just try to trust the doctor to do whats right. But this thyroid thing has me upset cause i first noticed my hair wasnt growing and i get fatigued. I have no energy .

greygoose profile image
greygoose in reply toFriend49

20+ years on statins? That means you've been hypo for 20+ years. And, you've only been on levo for 1 year. So, that's exactly what's been going on.

* Long-term untreated hypo.

* Under-treated hypo for 1 year

* Inappropriate medication for cholesterol for over 20 years

No wonder you have problems!

The un/under-treated hypo means you have high blood pressure (also taking inappropriate medication for that) and low nutrients (not correctly supplemented).

The statins mean that you will have low sex hormones, which will also cause problems.

Quite frankly, your doctor ought to be shot. But, as you can't do that, you should report her. Thank goodness she's leaving! Giving up medicine completely, I hope, because she is a truly terrible doctor!

So, what should you be doing to help yourself?

* First of all, see another doctor!

* Tell him, in no uncertain terms, that you want off statins!

* Tell him you want an increase in levo because 25 mcg isn't even a starter dose.

* Then, by yourself, start supplementing your nutrients in the way Marz has suggested.

* Ask for the results of your ferritin tests - you absolutely cannot trust this doctor when she says they are 'fine', because she has proved herself thoroughly untrustworthy! Low iron is going to make you very, very tired.

* Stop blaming the levo for all you problems and start blaming your doctor. She is the one that has neglected you and mistreated you for all these years. She is the one responsible for all your misery.

Let us know how you go on in a new post, so that more people can see it. Just adding onto an old posts by-passes a lot of people that could have something interesting to say. Good luck! :)

Friend49 profile image
Friend49 in reply togreygoose

Ok i will i want to mske sure you mean a statin is my cholesterol medicine ive been taking lotrel.for all these years.im so glad im findind a nee doctor.

greygoose profile image
greygoose in reply toFriend49

Yes, I mean your cholesterol medication, statins. You don't need it and it will cause you all sorts of problems. As I said, without cholesterol, you cannot make sex hormones. Your cholesterol is high because your thyroid hormones are low. When you raise your thyroid hormone levels, your cholesterol will decrease. Statins are dangerous things and totally unnecessary.

Friend49 profile image
Friend49 in reply togreygoose

You mean ive been on statins all these years and i didnt have to be so stop taking them. I really dont want to be on meds if i dont have to be i thought they helped heart and strokes

greygoose profile image
greygoose in reply toFriend49

I'm afraid that's just what I do mean, yes.

Statins lower cholesterol. But, cholesterol doesn't cause heart attacks and stroked, that is a myth.

It's pretty certain that your cholesterol was high because you were undiagnosed hypo. But, doctors - who know no better - love to put patients on statins. I think they get some sort of financial incentive. But, they know nothing about cholesterol and nothing about thyroid. So, not likely to make the connection.

But, all those years on statins will be causing all sorts of problems for you, such as lowering your sex hormones. They are not recommended for women, and they are not recommended for hypos. So, you should never have been put on them in the first place.

LAHs profile image
LAHs in reply toFriend49

Hello Frien49, you have had spectacular advice from Marz and Grey goose since I last wrote. I agree that you should try to get off the statins because statins will interact with your thyroid meds and block out any advantage your thyroid medication is trying to achieve. Statins compete for the transportation molecules which send the thyroid hormones or meds throughout your body. They are called TBGs - but never mind that, my doc had never heard of them and I don't suppose yours has either. Look, this is what I do and it may not be right for you but you could try and ease into it. I started to exercise, very slowly at first because I was a bit overweight and I didn't want to overtask my heart. I just walked down to the corner twice a day. Then I graduated to long walks once a day then finally started to ride my bike - on the flat. I tried my best to lose a bit of weight (via the grapefruit diet) and I started to eat piles of garlic or take Garlique tablets (2 a day). Now, I never got down to "Normal", I am 135/60 which is a hell of a lot better than my old 160/70 but it's a start. This way I avoid the statin route, even though my doctor is always pushing it.

You know, while I am thinking about it, the statins could have caused the thyroid problem - that competition for the TBGs I mentioned above, the statins shut out your natural thyroid hormones, made you hypo which in turn caused the high cholesterol (which GG mentioned above), which in turn raised your BP and so round and round. I think you should first attack the high BP. Get some books on the subject, start with some simple pamphlets and dedicate six months of your life to diet and exercise and I think you will get results - which will encourage you. Oh, and btw, I know this is hard, it's very easy to say, very hard to do, but give it a try.

Friend49 profile image
Friend49 in reply toLAHs

Ok ill get reading on it and ill take myself off statins. Thanks for the imput.

LAHs profile image
LAHs in reply toFriend49

Friend49, don't just go cold turkey on the Statins! Take your BP at different times of a day straight away, record these numbers in a diary and use these numbers as a baseline. Do your diet and exercise routine for a week and remeasure your BP, record your measurements in the diary including the time of day. If you have succeeded in lowering your BP a little bit then reduce your statin dose - a little bit. Repeat this every week weaning yourself off the statins if your diet and exercise have resulted in a decrease of your BP. Regarding taking your BP, at any one measuring time take it at least 3 times, keep the original readings and take an average, this is because the first one will probably be high due to finding a parking space and walking into the pharmacy (that's where they have free and easy to use BP machines, you have probably seen them). After you have sat there for a few moments between readings your BP will settle down to a more typical level. If it takes a month to start seeing results, don't get discouraged. I remember I bought a little book called "Reduce your BP naturally". If I can find it I will post details, I remember that I ate a lot of celery, beet root, garlic and fish - not all together, it's just what I remember always shopping for and preparing. OK, give it a try but don't forget no cold turkey on statins.

LAHs profile image
LAHs in reply toLAHs

P.S. I didn't find my book but if you copy and paste this:

"Fifteen natural ways to lower your blood pressure"

into Google you will find an excellent article on how to lower your BP via "natural"

methods.

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