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Thyroid UK
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I'm new here and would love some advice please.

I have been taking levothyroxine for 23 years. I was on 150 mcg a day (prescribed by my uk Doctor) until last October when I was referred to an Endocrinologist in Spain for high Cholesterol. She put me on statins for the HC at the same time reduced my levo to 88mcg. Appointment in Jan 16 she increased to 88mcg and 100mcg alternate days. Appointment July she increased to 113mcg. The problem is that I actually felt ok on 150, since it's been reduced I have put on 16 kilo's and have absolutely no energy and quite often headaches. For the first time in July I asked for my blood results. They are TSH 14.100 (0.300 - 4.700) FT4 0.99 (0.70 - 1.80) FT3 2.42 (1.80 - 4.20). In addition to this it is confusing because I am also having Chemotherapy for Lung cancer treatment started Feb 2015. I am on the 2nd line phase of chem having just had my 3 weekly 5th dose out of 6 with tablets in between. After the 6th dose if it proves to be effective I will continure with just the tablets. There's no doubt the Chemo does knock you about a bit but you would normally expect to be feeling ill for a week or so not 3 weeks as I am at the moment. Whenever I mention this to the Oncologist he shrugs and says it's the chemo. I'm not sure and would be grateful for any opinions on this. Hope this makes sense. Thank you.

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This 'endocrinologist' is dreadful. Lowering your levothyroxine will increase your cholesterol. A TSH of 14.1 is far too high along with the low fT4 there's no way fT3 can become adequate. Whilst it is possible that there might be a need to reduce your levothyroxine a little to help overcome the lung cancer (I've no knowledge in this area) it would not justify the big reduction you have had. I would check out the qualifications of this endocrinologist and try and see someone else.

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Hi jumh111, Thanks for your reply, that's very interesting. To be honest the Endocrinologist is not a very nice lady and is not very easy to talk to. Unfortunately I am being treated through the hospital and funny enough recently made an appointment with a different Endo who refused to treat me as I wasn't her patient so she made me an appointment with the original one. I feel the best thing I can do is to learn about the Thyroid function and perhaps talk to her again when I see her in November with the blood results in front of us. I find it amazing that in 23 years I have never looked up Thyroid as I have always been happy to take the pills and just get on with it. Can't believe there is so much more to it.

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You should not be taking statins. Not under any circumstances. Your cholesterol is high because you are so very, very hypo. It will go down when your FT3 level improves. But, in any case, it is of no importance. Cholesterol does not cause heart attacks or strokes. It is a necessary nutrient, and you need it. Your body is just not using it correctly because of the low T3, so it mounts up in the blood. That's all. And, it is not recommended for hypos to take statins. Your awful endo should know that!

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Hi greygoose. Ok so in your opinion what should I do to get my T3 levels better? Self medicate? My CH levels are 315 (140-200) HDL 91 (35-60) LDL 201.3 (0 - 155) VLDL 22.6 (10-32) Not sure if that means anything to you or anyone but just in case it does. Obviously my CH levels were high when I was taking 150 levo as that was when I was first referred to the Endo. I had an ultrasound on my thyroid in Jan which came back ok and as I have a CAT scan every 6 weeks or so she also checks on that. She suggested last appointment when I asked what was causing the HC that it could be down to a family thing. I must add there is quite a bit lost in translation when speaking in English and Spanish. Anyway the more feedback I get the more I realise I need to start looking at this in greater depth. Thanks.

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You could self medicate, or is it possible to move drs? Levo is available over the internet and someone will pm with a reliable source if you post that request. Your Tsh should be below two, or indeed, lower. I wonder if it ever was there?

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Levo is actually available over the counter in Spain so I don't have a problem getting it. Thanks.

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You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D and gluten connection to autoimmune Hashimoto's too.

Do you ever go back to UK for visits? If so, you could get full test done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

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

Usual advice on this test, (home one or on Spanish NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

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Grrrrrrr, what is wrong with these Endo's?? They seem to know nothing about thyroid care and I really feel for you going through all of this unnecessarily when you have enough to deal with. Good advice below so I'm just adding my sympathies.

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Yes we do go back to the UK, 3 times this year so far but all of it was at the beginning. Am thinking of going again certainly before Christmas so I will definitely do something then. I also have quite a lot of visitors coming in Sept and Oct so I will look and see whether it is possible to have them bring the kit and take it back for me. I take fairly regularly, when I remember and have done for at least a couple of years Boots re-energise effervesant tabs which contain a concoction of vitamins. Would like to know what you think of them? Thanks for you help.

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Thanks Nanaedake. That's very kind of you but to be honest I'm not after sympathy. I'm just getting very frustrated at not being able to do very much and after about 10 min of doing anything I have to sit down and rest. Everybody I speak to says "it's the chemo, it's the chemo" and even though I know that is playing a part I don't feel it's all down to the Chemo which is why I have started to investigate the Thyroid, and especially as my dosage has been decreased so much. I should add that the treatment I have received in Spain regarding my Cancer has been absolutely brilliant, the Oncology here is beyond excellent, so not all departments are bad.I think with the Thyroid, Doctors seem to want to bring the amount of Thyroxine down to the lowest level and build it back up I had the same with my Doctor in the UK for a long time. Why she couldn't reduce it from 150 slowly and then check the levels I have no idea. Crazy to have to suffer because the Endo doesn't seem to know what she's doing. That's my opinion. Thanks again I do appreciate you comments.

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